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Drugs/Medication Questions

  1. I'm taking medicine for depression. The label says I shouldn't stop taking it without my doctor's advice. What could happen?
  2. An endicrinologist who is treating me for diabetes has asked me to inquire if it would be appropriate to administer a statin based cholesterol drug with my history of elevated CPK's (generally 350-500 range)?
  3. Are there any negative side effects to taking Gabitril for a mood disorder with my CMT?
  4. Are any of the ingredients in the sleep aid "Ambien" harmful to those who have CMT? I started taking Ambien a few months ago and I have noticed a dramatic change in leg strength over the past few weeks.
  5. I am a 35 year old male who has been lifting weights off and on since I was 17. I have been hearing a lot about the use of creatinine to augment strength workouts. Is creatinine contraindicated with CMT?
  6. I am interested in learning more about the CMT neurotoxic drug list. Why is a drug placed on the list? What is a "mega dose"? Regarding pyridoxine (Vitamin B6), should we avoid multivitamins with B6?
  7. Why are certain drugs considered neurotoxic for CMT patients? Is there general knowledge of what happens when these items are ingested by someone with CMT?
  8. I have CMT. Are there any antibiotics I should not use? My doctor has prescribed Cipro for a urine infection. I vaguely remember reading something about some antibiotics I should avoid due to my CMT diagnosis. Perhaps it was Lithium?
  9. Is it O.K. for someone who has CMT Type II to use Mycolog II Nystatin and Triamcinolone Acetonide cream USP for dermatologic use?
  10. Is there a medication which controls high cholesterol that people with CMT can take?
  11. My doctor would like me to discontinue Premarin and Fosamax. She asked if this is contraindicated. I am 65 and have had CMT since childhood. Bone density is the reason I've been on Premarin for 12 years.
  12. Would you please comment on the possible neurotoxic effect of Tylenol, aspirin, or Advil as over-the-counter pain relievers for CMT patients?
  13. I have been having a problem with osteoporosis and my doctor feels that the problem might be related to my CMT. He wants to start me on estrogens and I am wondering if they will cause me any difficulties because of CMT?
  14. My eldest son inherited CMT from me, but has not been severely handicapped, though he is now 49 years old. He is bothered by the inability to button his shirts and is now taking L-Histidine, 500 mg. per day and feels it has helped his hand function. We've been told that this essential amino acid is important for the maintenance of the myelin sheath that protects the nerves. Because he is also diabetic, he does not consume much rice or bread which, I understand, are natural sources of histidine.Has any study been done on the positive or negative effect of this acid on CMT patients?
  15. I was diagnosed with CMT at the age of 34. I'm now 60 years old and work full time and am only mildly affected with the disease. I have borderline high blood pressure and m doctor just prescribed 25 mg daily of atenolol, a beta blocker. Do beta blockers have adverse side-effects on CMT patients? I have already noticed that my extremities are much colder since I started on atenolol. Fatigue and muscle weakness are noted as possible side effects. What is your opinion on the use of beta blockers by people with CMT?
  16. I have read in several places that flu shots are recommended for people with CMT, but when I went to get a flu shot this year, they had a warning up that said that the shot was not recommended for people with neurological disorders such as MS. Given that CMT is a neurological disease, are these flu shots recommended or not?
  17. Over the years, I have tried a variety of medications to treat my CMT pain. Recently, I was advised to take Neurontin (brand name for gabapentin). A whole new pain-free life has been opened up for me. I've tried to find information about how Neurontin works to stop the pain, give me stamina and better balance. Have there been any studies on the benefits of Neurontin for people with CMT?
  18. I am going to have an endoscopy and the doctor is planning to use Versed. Is there a danger from this drug? I had the procedure previously and chose not to use this medication.
  19. Are people with CMT prone to reactions from anesthesia when having surgery?
  20. I am scheduled to undergo a colonoscopy, and I am told that a type of nuclear medicine will be used during the procedure. Are nuclear medicines dangerous for someone with CMT?
  21. I am taking biotin because I have brittle nails, but I am concerned because biotin is listed as B-complex. Can biotin have an adverse effect on CMT?
  22. I’ve been on Coumadin for 15 years and I’ve recently noticed changes in my PT/PTT (tests for blood coagulation). I have also been taking Neurontin and Pamelor for the last eight months. I am a 40-year-old woman, and I was diagnosed with CMT after the birth of my daughter in July 2004. Are there any possible side effects from the use of these drugs?
  23. I am 54 years old with shortness of breath not related to heart, emphysema, bronchitis or any other obvious reasons. I had pulmonary breathing studies done along with an extensive cardiac work-up. Specifically, my question relates to the drug, Macrodantin. For a period of two years, I was taking a daily regime of this drug along with an increased dose when the urinary tract infections (UTI) would flare up, so all in all, I’ve taken quite a bit. Last year, (while still on the drug), I developed severe shortness of breath which prohibited me from walking. It was actually my rheumatologist who figured out the Macrodantin might be the culprit. So, the drug was stopped and the breathing did improve. Yet, after being off the drug for a year, my shortness of breath continues, although certainly not as severe as it was while taking the drug. I have an upcoming appointment with a pulmonologist, and was hoping to be armed with a little more information prior to the appointment. Can you tell me how this drug adversely affects CMT patients or why?
  24. I have never been formally diagnosed with CMT, but I have the symptoms as I read about it and a recent examination by a neurologist seemed to confirm that I have it. About 6 years ago I had prostate surgery and was previously on Androderm patches. In prep for surgery I had to stop the Androderm and since then I have noticed a marked weakness in my legs. I have asked my doctor to prescribe Androderm again for a while to see if it will help in any way. Is the use of Androderm advised or not advised?
  25. I am a woman of a certain age with CMT. I have been taking 15mg/day of prednisone for five days for osteoarthritis, and I have experienced a sudden onset of muscle weakness in my lower legs. A nurse in my doctor's office advised me to reduce my intake to 5mg/day, which I did yesterday, but I have not yet noticed any improvement. Is there any reason for me to be concerned about taking prednisone?
  26. I have CMT and recently have been undergoing treatments for breast cancer. After finishing 4 treatments of Adriamycin, my legs became so weak that I was unable to walk. A nerve conduction study showed no detectible nerves in my lower legs. The neurologist thinks that the Adriamycin made the neuropathy that I already had worse. The oncologist said he had never seen any documented case of this happening. I would appreciate any explanation that you could give me.
  27. A close member of my family who was found to have CMT (not active until now), took Lamisil pills for 3 weeks for the treatment of a fungus infection on his toes. After 3 weeks, he got a strange rash and was unable to move his arms and legs. He immediately stopped taking the pills, and after a week, he is still paralyzed. My questions are: 1) Do you have any similar cases with CMT patients and this drug? 2) Will his paralysis be reversible? 3) Can we assume that this drug worsened his CMT condition?
  28. I am bi-polar and take 1800mg of Eskalith (lithium) a day. I was diagnosed with CMT in 1999 and since then I have developed a problem with severe shaking as if I were really cold. I would appreciate any information you can give me about this.
  29. I have been taking Reglan for intestinal problems while in the hospital. I believe it has caused a serious balance problem for me, and I wonder if it should be on the CMT drug list. I also take heavy doses of lomotil for ulcerative colitis.
  30. My doctor has informed me that he will administer propofol during my colonoscopy. Do I have any cause for concern?
  31. You have statins listed on your general drug list, and you have several specific statins listed on your expanded drug table, but rosuvastatin (Crestor) is not listed. Should it also be on the list or is it not known to have any adverse effects?
  32. I am currently taking Tylenol Arthritis Pain formula, but the directions say that it should not be taken for more than 10 days. The same direction applies to Aleve, and there are now concerns that Advil and other NSAIDS may lead to complications similar to those caused by Celebrex and Vioxx. Is there a recommended drug for the control of chronic pain due to arthritis that would not cause undue complications for someone with CMT?
  33. Is the prescription medicine Requip safe to take with CMT? My PCP thought that Requip would help my restless legs at night, but I want to make sure it is safe. Also, I have severe pain in my feet if I am on them for only a short time. What pain meds are safe to take with CMT? My feet and legs sometimes hurt really bad at night and I cannot fall asleep due to the pain. Ibuprofin and Tylenol are not strong enough. I have taken Vicodin ES which helps the pain and helps me to sleep. Do you have any other recommendations? I do not want to take something that I could become "hooked" on. Also, is the antidepressant Lexapro safe to take with CMT?
  34. We have looked on the list and read that oral antibiotics are okay for CMT patients; however, we were wondering about the 30-day antibiotics. Are they too strong for people with CMT?
  35. I have CMT Type 2 and have borderline high cholesterol. My physician advises not to use a statin. He suggested Zetia or Ezetimibe for lowering cholesterol. Are these drugs safe for me to use? What are the side effects?
  36. I have extreme hot flashes/sweats day and night affecting my duty in the military and my personal life. Since I also have CMT1A, it’s much worse to deal with. I’m about ready to go back on HRT (hormone replacement therapy) but an endocrinologist saw a study that suggested progesterone might be bad for me. The endocrinologist is suggesting Serafem instead.
  37. Your medical alert lists the risk of Pyroxidine as Moderate to Significant. I now have a prescription for Metanx, which includes 25 mg of Pyridoxal 5’-phosphate (B6). Is that the same or a problem?
  38. I am a CMT patient. My doctor prescribed 90-day dosage of metanx for elevated cholesterol. I stopped taking it about 2 weeks ago, and soon after that my body started breaking out in rashes everywhere except my face. It itches and leaves ugly marks like chicken pox, which I had as a kid, more than 50 years ago. I cannot figure out what else might have happened, except for a minor gum surgery soon after, where Novocain (I believe) was used for anesthetic purposes. The only other medication I take is accupril for blood pressure. Do you know if metanx has any withdrawal effects?
  39. Has there been any investigation regarding the use of Methylcobalamin in treating CMT sufferers?
  40. I have had CMT for over 20 years. I also have diabetes and have been on kidney dialysis. I am going to have a kidney transplant soon and would like to know if the drugs are going to affect my CMT?
  41. I am a 53-year-old female who was diagnosed with CMT about 13 years ago. I was recently given a prescription for Amerge 2.5 by my neurologist and the medicine made me feel like I couldn't move my legs. I also had severe cramps in my lower extremities. Are those side affects related to the medication?
  42. One of the side effects listed for Prilosec which should be reported to a physician is numbness and tingling of the hands and feet. Since I already have numbness and tingling of the hands and feet, I’m not sure if I should continue taking it. Is there anything on record to the effect that Prilosec is contraindicated for people with CMT?
  43. I know that statins are listed on the drug watch list for their possible effect on muscles. However, recently I have been reading that Zetia may also affect people with CMT and other such diseases. I have CMT Type 1A and have been taking Zetia prescribed by my doctor to lower my cholesterol. It has worked as expected, but how do I know if Zetia is having a negative effect on my muscles? I have always experienced general muscle discomforts and pains, especially a lifetime of back problems and compound scoliosis. How can I discern if the Zetia is contributing any more pain to my already evident problems?
  44. Is there any information on EVISTA (Raloxifene HCI) and side effects it can have on persons with CMT?
  45. I'm 37 male with CMT and Crohn’s disease.I take remicade treatments for my Crohn’s. My symptoms are rapidly getting worse. Can the remicade have an effect on the CMT?
  46. I am treating a 20-year-old patient with leukemia. After his 4th dose of vincristine, he had progressive, severe neuropathy in all extremities, dysphagia and dysarthria. EMG studies are consistent with CMT. Genetic studies are pending. Retrospectively, we discovered that his brother had an EMG 13 years ago which was consistent with CMT. The patient is in remission after induction chemotherapy. However, he needs additional chemotherapy. Can you give me any additonal information about the reason that adriamycin is in the uncertain category? Have any patients received high dose cytarabine?
  47. My husband has Charcot Marie-Tooth disease. He also has hepatitis C. He has been on Pegasys and Copegasys for 10 weeks now. I think that the effects he feels are more severe than what other people experience. Are there any studies on patients on treatment with both conditions?
  48. Is there any reason why a CMT patient should not take Humira for rheumatoid arthritis?
  49. My son is 20 and has just been diagnosed with CMT1X. He also has tremors of the hands. The doctor has prescribed Inderal LA 80 for the tremors. Will this work or have any affect on the CMT. Do you have any other suggestions about this?
  50. Do lupron depot 3.75 mg injections (1x/mo) cause any know problems with CMT patients? I know it can cause 3 percent bone loss, thus one reason they only administer it for 6 months at time. I have been noticing wasting in my shoulders, hips, arms, under my ribs (front and back), and right calf. My father, 2 sisters (one deceased), cousin(male) and I all have CMT. I also have antiphospholipid syndrome, where my anticardiolipin antibody igm and beta2 glyprotein igm are elevated, which causes my blood to clot. I just recently had a heart attack due to a blood clot.
  51. Recently, there has been a lot written about law suits against the manufacturer of Lipitor because it causes peripheral neuropathy. Do you think this is a problem that CMT patients should consider?
  52. I was just diagnosed with macular degeneration. The specialist told me there is a new treatment. They inject Avastin into the eye. This is a cancer drug. I read in the newsletter that some cancer drugs were harmful to CMT patients. Do you know anything about this drug that would help me make a decision?
  53. I’m having surgery and will be given Versed. I read somewhere about being careful with Versed. I have CMT 1A and am wondering if that medication will be okay.
  54. I know that “statin” drugs are used for cholesterol control. I have been taking the anti-fungal drug Nystatin for years to control Meniere’s disease. Is Nystatin a member of the statin family or is it just an accident of name?
  55. Is there any reason why a patient with CMT should not take anitmuscarinics? In particular, antimuscarinics to treat overactive bladder, such as Vesicare?
  56. My 9 year old son was recently diagnosed with CMT Type 2, x-linked, with central nervous system demyelination. So, in addition to the regular CMT findings, he also was found to have white matter lesions on the brain MRI. We are still very new to this diagnosis, with the initial episode July 2006. Prior to the CMT diagnosis, my son was being treated for ADD. We had taken our son off Focalin XR, 20 mg. in mid-June for a summer rest. The initial CMT episode happened three weeks later. Is this type of medication contraindicated with CMT?
  57. I recently read in Parade Magazine about a new vaccine against shingles, Zostavax. Patients 60 years of age and older are advised to have this. Is there any evidence that a person with CMT should not take this?
  58. I have reviewed the Medical Alert list and the Frequently Asked Questions and have not seen information about Effexor being associated with neurotoxicity. Is it safe for a person diagnosed with CMT?
  59. Is the combination of Verapamil and Avapro as blood pressure medications considered neurotoxic? I take the above medications and my symptoms appear to be worse.
  60. My 18 year old daughter has CMT1A with relatively mild-to-average symptoms of CMT. She took a meningococcal vaccine and a flu vaccine which are recommended for freshman college students staying in dorms. (She has been taking the flu vaccine for the past several years with no adverse reactions.) Nine days later, she started having extreme tingling sensations in her hands, feet and her tongue; as well as severely increased weakness. She fell 6 times while walking one block. I took her to the ER. They ran several tests and couldn’t find anything wrong in the blood work or in the urinalysis. Could the vaccine have caused these symptoms in a CMT 1A patient? If so, how long should the symptoms last? They started 5 days ago, with some slight improvement. She still has the tingling sensation in her feet and occasionally in her hand. She is now able to walk short distances with some assistance.
  61. I have been on Prevacid for years. I switched to Prilosec recently. I then found out they were on the Medical Alert list. I told my doctor and she switched me to Protonix, which is not on the list. However, she said it is in the same class of drugs as the two on the list. Why would that happen?
  62. My mother and I both have CMT. She passed away last June and was debilitated for several years prior. My condition has been worsening at an enormous speed. After her death, I pored over some of her books (she was a psychiatrist) and found that Benzodiazaprines are very effective in treating pain. I am currently taking Klonopin and Cymbalta. I haven’t seen anything in recent literature about benzodiazaprine. Has research changed those earlier findings? As far as the shooting pains, Cymbalta has almost completely taken them away. Is there a generic form being developed?
  63. I am a 25 year old who was diagnosed with CMT by EMG. My doctor also diagnosed me with Charcot joint, osteoarthritis, and lumbar disc syndrome. I have a severe crippling disease that has gotten progressively worse. I have had numerous fractures and sprains throughout my lifetime, and a few years ago I had a deformed bone taken out of my right foot and screws put in to tighten my ligaments. My doctor has me on 20 mg of methadone for long-acting pain relief and Vicodin for breakthrough pain. I also take Valium for anxiety. The pain has gotten a lot less, but since starting the methadone, I have been waking up with numbness in my hands and my hands in a clawed position. The doctor says that in order to stop this medication, I must be slowly weaned off of it. Could the medication be making my CMT progress, and how safe are narcotic treatments for long term use? I have tried Neurontin with little or no relief.
  64. I recently had an endoscopy and was told to start taking Aciphex for my gastritis and duodinitis. Is this a safe medication for CMT? I see that Prilosec is on the drug list. Is Aciphex a similar compound?
  65. A man is concerned that the drug his oncologist wants to put him on might be related to Vincristine. It is Vinblastine. Could you let me know if he should be concerned?
  66. Are there nutritional supplements and/or herbal supplements that should be avoided by a person with CMT? Can increased doses of Magnesium Citrate cause neurotoxicity? My chiropractor has me taking MyoCalm PM as needed for muscle tension which contains Magnesium Citrate 150 mg and Calcium Lactate 75 mg as well as other herbs. I reviewed the toxic drug list and did not see any mention of supplements.
  67. Can you help me figure out the risk factors of taking Zetia and having hepatitis C?
  68. I noticed on your medical alert page that you put amitriptyline in the negligible to doubtful risk category. I definitely had a very bad reaction to it. To date it was the worst of any other meds I have taken for CMT nerve pain. I have CMT and have tried many medications to ease the neuropathic pain. I have had little success. Vicoden is the most manageable without any major side effects or thought-process disruption. Neurontin caused me to break out with very painful cysts on my face and did little to ease the nerve pain. I recently was prescribed amitriptyline. The very first dose of 5 mg caused some weakness in my legs and increased back pain. On the fourth day, when I increased the dose to 10 mg, I suffered such severe back and leg pain that my daughter took me to the emergency room. By the time I returned home (7 hours later), my pain had eased quite a bit, so I went ahead and took the amitriptyline as prescribed when I went to bed. Within an hour I was in horrific pain again, lasting about 6 hours. Needless to say, I will not be taking this drug again.
  69. I have CMT and had breast cancer a few months ago. The oncologist wants me to take Arimidex. I am rather concerned because of the side effects that can occur with any patient. Do you have any information about Arimidex and CMT patients?

Drugs/Medication Answers

1. I'm taking medicine for depression. The label says I shouldn't stop taking it without my doctor's advice. What could happen?

The major concern about stopping an antidepressant is that you might not be ready to do so. Most doctors recommend that you continue taking an antidepressant for 4-6 months after you feel better to reduce the risk of your depression returning.

Once you and your doctor decide to stop the medication, the dose should be gradually reduced over a few weeks to avoid the chance of unpleasant effects, or withdrawal symptoms, from suddenly stopping the drug. Some experts recommend tapering the dose over 6-8 weeks if you've been on the drug for 6-8 months, as a rule of thumb. During this time, you and your doctor should be watching for evidence of withdrawal symptoms or a depression recurrence.

Older antidepressants like tricyclic antidepressants and monoamine oxidase inhibitors have been known to cause discontinuation effects. The most common effects seen in the case of tricyclic antidepressants such as Tofranil and Elavil are upset stomach and nausea, flu-like symptoms, anxiety, low mood, and sleep disturbance. In the case of stopping monoamine oxidase inhibitors, such as Nardil, you may experience disorientation, confusion, mild movement disturbances, and even hallucinations.

It is also becoming increasingly evident that the newer class of antidepressants, called selective serotonin reuptake inhibitors, or SSRIs, such as Paxil and Zoloft, also have discontinuation effects. The most common are dizziness, lightheadedness, weakness, headache, stomach upsets, sleep disturbances, and anxiety. Problems have also been described with some even newer antidepressants, such as Effexor.

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2. An endicrinologist who is treating me for diabetes has asked me to inquire if it would be appropriate to administer a statin based cholesterol drug with my history of elevated CPK's (generally 350-500 range)?

Mildly increased CK values are not a primary reason to withhold a statin drug, but muscle symptoms and CK values should be checked while on the drug. The risk of worsening the neuropathy appears to be very small, but incompletely known, while the benefit of the drugs is well established. Raised CK levels, in general, are not common with CMT.

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3. Are there any negative side effects to taking Gabitril for a mood disorder with my CMT?

It comes down to risk/benefit ratio. Anticonvulsants (some of which have been noted to have mood altering efficacy) such as tiagabine (Gabitril) are notorious for side effects, e.g., dizziness and drowsiness. These side effects are also present with the conventional antidepressants. CMT patients are, therefore, confronted with a dilemma, the feeling of well-being associated with these medications vs. the fear of falling down and injuring themselves.

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4. Are any of the ingredients in the sleep aid "Ambien" harmful to those who have CMT? I started taking Ambien a few months ago and I have noticed a dramatic change in leg strength over the past few weeks.

There is no known link between zolpidem (Ambien) and neuropathy or worsening the neuropathy of CMT. The drug can cause sleepiness or sedation, which is its primary useful effect and can make some motor tasks more difficult for CMT patients. However, if there has been a notable decline in strength, then attention by a local physician should be considered to look for potential causes other than the Ambien.

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5. I am a 35 year old male who has been lifting weights off and on since I was 17. I have been hearing a lot about the use of creatinine to augment strength workouts. Is creatinine contraindicated with CMT?

I know of no contraindication to creatinine in patients with CMT.

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6. I am interested in learning more about the CMT neurotoxic drug list. Why is a drug placed on the list? What is a "mega dose"? Regarding pyridoxine (Vitamin B6), should we avoid multivitamins with B6?

The neurotoxic drug list was compiled by neurologists and is continually monitored by them for additions and corrections. A mega dose is defined as 10 times the RDA (recommended daily allowance). A daily multivitamin capsule should not be a problem.

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7. Why are certain drugs considered neurotoxic for CMT patients? Is there general knowledge of what happens when these items are ingested by someone with CMT?

Neurotoxicity is the capacity of chemical or biologic agents to induce functional or structural changes in the nervous system resulting in tissue injury. There are many substances which produce damage to normal peripheral nerves. These substances are heavy metals such as lead, arsenic, mercury and thallium, or drugs such as vincristine, thalidomide, pyridoxine, etc. The mechanism in each of these substances is different and in some of them, the exact mechanism is known and in others, it is not. If these substances damage normal nerves, patients that already have a nerve disease, either hereditary as in CMT or acquired in diabetes, are more susceptible to these substances. The more severe the neuropathy, the more susceptible the patient to the exposure of the neurotoxin.

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8. I have CMT. Are there any antibiotics I should not use? My doctor has prescribed Cipro for a urine infection. I vaguely remember reading something about some antibiotics I should avoid due to my CMT diagnosis. Perhaps it was Lithium?

There are some drugs that can damage nerves. Antibiotics taken orally should not present a problem to someone who has CMT.

The main drugs used for medical treatment that can present a problem are certain drugs used for chemotherapy, such as cis-platinum. The aminoglycoside antibiotics, given IV, can have some effect on peripheral nerves, but generally the effect is small.

The main drugs, taken orally, that you need to be aware of, are alcohol and excessive doses of vitamin B6. Taking doses of 100 mg per day or more potentially can damage peripheral nerves. I generally recommend that people not take more than 25 mg of B6 per day unless there is medical reason for a higher dose.

There is a long list of drugs which have no more than a slight effect on peripheral nerves. I do not advise my patients to worry about these drugs, if taken for a limited time. Your doctor can always look up a drug in the Physician's Desk Reference to check for you. I do not consider Cipro a drug that someone who has CMT should avoid.

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9. Is it O.K. for someone who has CMT Type II to use Mycolog II Nystatin and Triamcinolone Acetonide cream USP for dermatologic use?

There would seem to be no problem with the topical application of Mycolog II cream. I am aware of only one reference to peripheral nervous system toxicity and topical creams/ointments. A 30 year old African woman sustained weakness in her legs and a burning sensation in her feet for two months following the application of hydroquinone (skin bleaching) cream, which she had been using for four years. Her symptoms dissipated in four months.

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10. Is there a medication which controls high cholesterol that people with CMT can take?

There are many medications that reduce serum cholesterol levels, but the "statins" are the most effective and most widely used. The current evidence suggests that statins rarely cause myopathy and even neuropathy. Given the health benefits of reducing high cholesterol levels, and the rarity of these (and other) side effects, statins remain the drugs of choice for treating high cholesterol levels. It is a theoretical issue whether patients with CMT should avoid statins, as there is no evidence that statins worsen existing neuropathy.

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11. My doctor would like me to discontinue Premarin and Fosamax. She asked if this is contraindicated. I am 65 and have had CMT since childhood. Bone density is the reason I've been on Premarin for 12 years.

There is no listed contraindication to the use of alendronate (Fosamax) in patients with CMT . However, there are adverse effects involving muscle pain (or musculoskeletal pain), which has been associated with the use of this medication (clinical studies) in 6% of all patients receiving a 40 mg daily dose. This adverse effect usually doesn't result in discontinuation of the alendronate.

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12. Would you please comment on the possible neurotoxic effect of Tylenol, aspirin, or Advil as over-the-counter pain relievers for CMT patients?

There are no reported contraindications in taking these over-the-counter drugs for persons with peripheral neuropathies.

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13. I have been having a problem with osteoporosis and my doctor feels that the problem might be related to my CMT. He wants to start me on estrogens and I am wondering if they will cause me any difficulties because of CMT?

I have not encountered any problems with CMT patients who have been taking hormone therapy of estrogens or progesterone. Neither do I believe that there is any theoretical reason why this should make a neuropathy worse. I believe that if there is any deterioration of her CMT, she should be evaluated immediately, but I would not expect such and believe she should take the advice of her gynecologist.

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14. My eldest son inherited CMT from me, but has not been severely handicapped, though he is now 49 years old. He is bothered by the inability to button his shirts and is now taking L-Histidine, 500 mg. per day and feels it has helped his hand function. We've been told that this essential amino acid is important for the maintenance of the myelin sheath that protects the nerves. Because he is also diabetic, he does not consume much rice or bread which, I understand, are natural sources of histidine.Has any study been done on the positive or negative effect of this acid on CMT patients?

L-Histidine is an essential amino acid that is supplied in adequate amounts in any good diet. To my knowledge, there are no studies using L-Histidine in patients with neuropathies and none in hereditary neuropathies. However, I do not know if L-Histidine is beneficial in diabetic patients. If that is the case, he may continue taking it. Diabetes mellitus produces different types of peripheral neuropathies. Some of these are very serious. Your son has two diseases that independently affect the peripheral nerves and in combination can aggravate the nerve damage. The genetic defects in most demyelinating types of CMT are known and the encoded proteins and their functions are already known. However, at the present time there is no effective treatment to stop or slow down the progression of the disease and we do not yet know how to regulate or replace the myelin proteins. There are only symptomatic treatments for CMT, including PT, OT, bracing and different types of surgeries.

Your son needs the advice of an internist to keep his diabetes under control. He also needs the advice of a neurologist regarding the CMT. A good occupational therapist may recommend some tools to facilitate hand and finger use.

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15. I was diagnosed with CMT at the age of 34. I'm now 60 years old and work full time and am only mildly affected with the disease. I have borderline high blood pressure and m doctor just prescribed 25 mg daily of atenolol, a beta blocker. Do beta blockers have adverse side-effects on CMT patients? I have already noticed that my extremities are much colder since I started on atenolol. Fatigue and muscle weakness are noted as possible side effects. What is your opinion on the use of beta blockers by people with CMT?

Provided there is no evidence of muscle damage (high CPK0 or vascular insufficiency (doppler studies) there is no reason why beta blockers should not be used for hypertension in patients with CMT. The cardiologist should be aware of any EKG changes.

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16. I have read in several places that flu shots are recommended for people with CMT, but when I went to get a flu shot this year, they had a warning up that said that the shot was not recommended for people with neurological disorders such as MS. Given that CMT is a neurological disease, are these flu shots recommended or not?

MS is thought to be an immunological disorder and, on this basis, flu shots are sometimes not recommended. This is not the case with CMT, but you should check with your personal doctor.

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17. Over the years, I have tried a variety of medications to treat my CMT pain. Recently, I was advised to take Neurontin (brand name for gabapentin). A whole new pain-free life has been opened up for me. I've tried to find information about how Neurontin works to stop the pain, give me stamina and better balance. Have there been any studies on the benefits of Neurontin for people with CMT?

Neurontin is one of a group of medications that are used to treat painful peripheral neuropathies. As with the other medications utilized for this "neuropathic pain," including amitryptiline, nortryptiline and carbamazepine, Neurontin is not specific for CMT pain, but is used in many painful neuropathies. Unfortunately, none of these medications work all the time for all patients; some work for some patients, others work for other patients. It is not easy to predict which medication will work for which patient in advance. While there are thoughts on how some of these medications work, how Neurontin stops pain is not clear. Of interest is the fact that other anti-seizure medications, like phenytoin (Dilantin) or carbamezepine (Tegretol) also treat pain in some patients with neuropathy.

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18. I am going to have an endoscopy and the doctor is planning to use Versed. Is there a danger from this drug? I had the procedure previously and chose not to use this medication.

Midazolam (Versed) is a medication used [in this instance] to assist in the sedation, reduction in anxiety, and impairment of memory in patients undergoing procedures (including endoscopies). Some medications have so-called "black box warnings," whereby past experiences dictate caution in their use because of significant adverse reactions. Midazolam has a black box warning: "Midazolam I.V. has been associated with respiratory depression and respiratory arrest. In some cases, where this was not recognized promptly and treated effectively, death or hypoxic encephalopathy resulted. Use Midazolam I.V. only in hospital or ambulatory care settings, including physicians' offices, that provide for continuous availability of resuscitative drugs and equipment and personnel trained in their use...." This would apply to any patient. As we know, the muscles affected in CMT patients are skeletal. Overdosing of Midazolam may be a concern in CMT patients...it sounds to me that since A.P. has undergone this procedure before with no difficulty with the use of Midazolam, it would be safer for her to repeat what she had previously done.

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19. Are people with CMT prone to reactions from anesthesia when having surgery?

Most people with CMT will have no problem with anesthesia. Only those with respiratory involvement (very rare) or vocal cord paralysis (a very rare variant) may have problems with anesthesia above that seen in the general population.

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20. I am scheduled to undergo a colonoscopy, and I am told that a type of nuclear medicine will be used during the procedure. Are nuclear medicines dangerous for someone with CMT?

It would depend on which nuclear medicines were used. I know of no evidence that the nuclear medicines used in diagnostic tests affect CMT patients differently than others. Nuclear medicines and radiation treatments used against cancers are in a different category, but the drugs generally used in colonoscopy are light anesthetics. None of these drugs, such as midazolam (Versed), are on the list of agents with increased risk.

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21. I am taking biotin because I have brittle nails, but I am concerned because biotin is listed as B-complex. Can biotin have an adverse effect on CMT?

There is no known association between biotin and neuropathy. The only B-vitamin clearly known to cause neuropathy from excessive use is pyridoxine (B6). However, all vitamins should be taken in conventional doses unless otherwise directed.

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22. I’ve been on Coumadin for 15 years and I’ve recently noticed changes in my PT/PTT (tests for blood coagulation). I have also been taking Neurontin and Pamelor for the last eight months. I am a 40-year-old woman, and I was diagnosed with CMT after the birth of my daughter in July 2004. Are there any possible side effects from the use of these drugs?

Many people take the blood thinner warfarin (Coumadin) for a variety of reasons. The drug interferes with blood concentrations of many other drugs and this fact needs to be taken into consideration when dosing, but there are no suspicions that it causes neuropathy or worsens CMT. Both Neurontin and Pamelor are used to reduce the symptoms of neuropathy and are not known to worsen the underlying neuropathy.

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23. I am 54 years old with shortness of breath not related to heart, emphysema, bronchitis or any other obvious reasons. I had pulmonary breathing studies done along with an extensive cardiac work-up. Specifically, my question relates to the drug, Macrodantin. For a period of two years, I was taking a daily regime of this drug along with an increased dose when the urinary tract infections (UTI) would flare up, so all in all, I’ve taken quite a bit. Last year, (while still on the drug), I developed severe shortness of breath which prohibited me from walking. It was actually my rheumatologist who figured out the Macrodantin might be the culprit. So, the drug was stopped and the breathing did improve. Yet, after being off the drug for a year, my shortness of breath continues, although certainly not as severe as it was while taking the drug. I have an upcoming appointment with a pulmonologist, and was hoping to be armed with a little more information prior to the appointment. Can you tell me how this drug adversely affects CMT patients or why?

Nitrofurantoin (Macrodantin) is an antibiotic used for a variety of problems, but more extensively in past decades for UTI’s. It is associated with causing and worsening neuropathy, especially if taken on an ongoing basis; however, the nerves that control respiration are not usually involved especially if the nerves to the limbs were not similarly affected. There is surprisingly little information about CMT patients using this drug on a chronic basis. The drug, however, is associated with other direct lung (pulmonary) toxicity of differing types and is more likely the cause of your problem. A pulmonologist would be better informed about what to expect about recovery depending on the type of problem causing the shortness of breath.

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24. I have never been formally diagnosed with CMT, but I have the symptoms as I read about it and a recent examination by a neurologist seemed to confirm that I have it. About 6 years ago I had prostate surgery and was previously on Androderm patches. In prep for surgery I had to stop the Androderm and since then I have noticed a marked weakness in my legs. I have asked my doctor to prescribe Androderm again for a while to see if it will help in any way. Is the use of Androderm advised or not advised?

Male and female steroids (hormones) of various types appear to affect a variety of normal nerve and muscle functions. Treatment with onapristone, a progesterone antagonist, has improved the neuropathy of the CMT1A rat, but has not been tested in humans yet. Testosterone (Androderm) has beneficial effects on muscle building, but also has numerous deleterious effects, including those on prostate tissue. The changes described are not surprising following the loss of the hormone treatment, but testosterone has not been adequately examined for safety and effect in CMT patients to recommend use for neuropathy. However, it is not something to avoid in a CMT patient, if indicated for another condition. As with any treatment with possible toxicity, the relative risks and benefits need to be weighed. The potential benefit may simply be adding more muscle and not improved nerve function.

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25. I am a woman of a certain age with CMT. I have been taking 15mg/day of prednisone for five days for osteoarthritis, and I have experienced a sudden onset of muscle weakness in my lower legs. A nurse in my doctor's office advised me to reduce my intake to 5mg/day, which I did yesterday, but I have not yet noticed any improvement. Is there any reason for me to be concerned about taking prednisone?

There are a number of complications of prednisone including loss of muscle strength, but the problem is usually mild and at higher doses than the woman was presently taking. The effects are uncommon and directed directly against muscle and not on the nerve or worsening of CMT. The effect is likely magnified with already weak or inactive muscles. I would be skeptical that the small dose would have a major effect, but it is possible. Decisions about steroid use or dose should be weighed against the expected benefit gained for the arthritis and the severity and type of the arthritis.

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26. I have CMT and recently have been undergoing treatments for breast cancer. After finishing 4 treatments of Adriamycin, my legs became so weak that I was unable to walk. A nerve conduction study showed no detectible nerves in my lower legs. The neurologist thinks that the Adriamycin made the neuropathy that I already had worse. The oncologist said he had never seen any documented case of this happening. I would appreciate any explanation that you could give me.

 Adriamycin is an agent reported to occasionally cause neuropathy in general, but not with the frequency or severity as some other chemotherapy drugs such as vincristine, Cisplatin, suramin, and taxol. A recent in-depth literature review found no cases going back to 1963 that described any example, positive or negative, of adriamycin on a CMT patient. The agent was placed on the list based on the experience with other types of patients receiving the drug as part of their chemotherapy. In addition most of the literature on other medications is based on patients with CMT1A (the commonest demyelinating form). We know very little about special risks for patients with less common forms of the disease.

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27. A close member of my family who was found to have CMT (not active until now), took Lamisil pills for 3 weeks for the treatment of a fungus infection on his toes. After 3 weeks, he got a strange rash and was unable to move his arms and legs. He immediately stopped taking the pills, and after a week, he is still paralyzed. My questions are: 1) Do you have any similar cases with CMT patients and this drug? 2) Will his paralysis be reversible? 3) Can we assume that this drug worsened his CMT condition?

There are no known reports of terbinafine (Lamisil) causing peripheral neuropathy or worsening CMT-related weakness. I performed a brief literature review and checked the manufacturer information to confirm this fact. A recent review of the North American CMT database uncovered no cases of terbinafine complications, but no patient may have reported using the medication. Rash, however, is a potential complication of any medication. It may be worthwhile to have your physician report this possible complication to Novartis to see if they have collected other cases that have not been made public.

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28. I am bi-polar and take 1800mg of Eskalith (lithium) a day. I was diagnosed with CMT in 1999 and since then I have developed a problem with severe shaking as if I were really cold. I would appreciate any information you can give me about this.

Tremor is one of the more common side effects of lithium. I would theorize that CMT would enhance this effect but I am not aware of any association between the two. The tremor is not a permanent effect or a sign of your neuropathy worsening, but you should discuss the problem with your psychiatrist to confirm this suspicion and weigh your options, in part depending on how bothersome the shaking is to you.

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29. I have been taking Reglan for intestinal problems while in the hospital. I believe it has caused a serious balance problem for me, and I wonder if it should be on the CMT drug list. I also take heavy doses of lomotil for ulcerative colitis.

There is no known or reported link between neuropathy worsening and either lomotril or metoclopramide (Reglan), but I am keeping a list of reports in case there are other reports that suggest a pattern. Reglan is associated with other neurological side effects, most commonly types of movement disorders, which are usually recognizable by treating physicians. Some forms affect muscle tone (dystonia), which can disrupt balance, especially if it is abnormal at the outset. It is difficult to sort out which effect is at work in this instance.

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30. My doctor has informed me that he will administer propofol during my colonoscopy. Do I have any cause for concern?

No. I am not aware of any problem with propofol as an anesthetic in CMT patients. There are concerns for prolonged general anesthesia in the ICU setting for many days to weeks, but there is no evidence of a problem with short-term anesthesia.

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31. You have statins listed on your general drug list, and you have several specific statins listed on your expanded drug table, but rosuvastatin (Crestor) is not listed. Should it also be on the list or is it not known to have any adverse effects?

There is no evidence that one statin is any better or worse as a risk factor for neuropathy, so Crestor is part of the group even without a clearly reported case. However, the effect with all of the statins is rare and we are not advising patients to avoid statins, only to be be aware of the association. Statins are clearly superior to the older treatments for hyperlipidemia (elevated cholesterol levels), so each treating physician needs to weigh the clear benefits of the drugs against this small risk in CMT patients.

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32. I am currently taking Tylenol Arthritis Pain formula, but the directions say that it should not be taken for more than 10 days. The same direction applies to Aleve, and there are now concerns that Advil and other NSAIDS may lead to complications similar to those caused by Celebrex and Vioxx. Is there a recommended drug for the control of chronic pain due to arthritis that would not cause undue complications for someone with CMT?

Pain control with the recent Vioxx concerns is a problem for all types of patients, not just CMT patients. The issue really needs to be discussed with each treating physician to weigh the minor risks of these drugs against the need for long-term pain control. Each case must be considered independently. The risks are for many things but not for worsening of neuropathy. Unfortunately, there are no easy answers, and there is no preferred agent for all patients. For inflammatory causes of arthritis there are other agents in use to suppress the arthritis which do not directly affect pain signals.

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33. Is the prescription medicine Requip safe to take with CMT? My PCP thought that Requip would help my restless legs at night, but I want to make sure it is safe. Also, I have severe pain in my feet if I am on them for only a short time. What pain meds are safe to take with CMT? My feet and legs sometimes hurt really bad at night and I cannot fall asleep due to the pain. Ibuprofin and Tylenol are not strong enough. I have taken Vicodin ES which helps the pain and helps me to sleep. Do you have any other recommendations? I do not want to take something that I could become "hooked" on. Also, is the antidepressant Lexapro safe to take with CMT?

Requip is a useful drug for patients with Parkinson's disease and appears to help many others with restless leg syndrome, but is not particularly useful for treating pain. However, there is no suggestion that it affects CMT neuropathy for better or worse. There is also no evidence of worsening CMT neuropathy from narcotics or related medications, but these drugs have other concerns if taken long term, which you mention. Antidepressants are increasingly used to treat pain and some have proven more useful than others. I have no experience using Lexapro for pain treatment but there is no literature to suggest that it is harmful to patients with CMT. The only SSRI type of antidepressant mediation with several but undocumented reports said to worsen neuropathy is the drug Paxil (paroxetine). The only antidepressant medication FDA-approved to treat neuropathic pain is Cymbalta (duloxetine); however, this is because it is the only one that went through the long and expensive approval process. Several others likely work as well or better.

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34. We have looked on the list and read that oral antibiotics are okay for CMT patients; however, we were wondering about the 30-day antibiotics. Are they too strong for people with CMT?

Taking antibiotics for a prolonged period sometimes puts one at other risks different than a usual 5-14 day course used for most infections. Usually this implies that the underlying infection is more severe or more difficult to eliminate. Only a few antibiotics are known to be of higher risk to CMT patients than others, so I would need to know the specific antibiotic to answer fully. The two used for bacterial infections with the most convincing link to neuropathy are metronidazole (Flagyl) and nitrofurantoin (Macrodantin, Furadantin, Macrobid). Others used for viral infections (HIV agents, wart virus) fungal infections (griseofulvin), and parasitic infections (malaria) are usually considered separately. There are a few others with minor or preventable risk, such as Isoniazid (INH). Most antibiotics in common use are not associated with neuropathy, even with prolonged use.

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35. I have CMT Type 2 and have borderline high cholesterol. My physician advises not to use a statin. He suggested Zetia or Ezetimibe for lowering cholesterol. Are these drugs safe for me to use? What are the side effects?

Zetia (Ezetimibe) is not a statin class of drug but works in a different way. However, the effect of statin class drugs on nerve function is far from certain. Neuropathy caused by statins is rare at a minimum and some recent review of the available knowledge calls even this fact into question. The primary neuromuscular complication remains the effect on muscle tissue, not nerve, and virtually ALL cholesterol agents can affect muscle function, including Zetia. Each case should be taken into consideration separately and the appropriate cholesterol lowering agents recommended, but the effect on CMT is only one factor to consider.

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36. I have extreme hot flashes/sweats day and night affecting my duty in the military and my personal life. Since I also have CMT1A, it’s much worse to deal with. I’m about ready to go back on HRT (hormone replacement therapy) but an endocrinologist saw a study that suggested progesterone might be bad for me. The endocrinologist is suggesting Serafem instead.

This is a complex situation. The effects of progesterone on CMT1A are still investigational.All of the data that I’m aware of is from laboratory cultures or rat nerves and models, not humans. Progesterone is involved with nerve function and one progesterone blocker (onapristone) is a source of interest for a treatment trial because of its beneficial effects on a rat model of CMT1A, but the issue is far from settled. These theoretical and laboratory tests must be weighed against your current hot flashes and related symptoms. I believe there are HRT formulations with lower progesterone content, but someone expert in that area would need to advise you on which formulation is most appropriate and the lowest risk for non-neurologic complications, such as endometrial hyperplasia. The degree of interference with your normal life and duties are important considerations. In other words, the evidence is not established that progesterone is directly harmful, but the laboratory evidence is suggestive and needs more study. I do not know of any documented case of someone’s CMT worsening because of birth control pills or HRT.

Serafem is a completely different type of agent and is the same chemical as Prozac (fluoxetine). I do not know the literature well, but do not think the success with these types of agents has been terrific in treating perimenopausal symptoms, but the risk of trying is low. The only agent in that group that has been questioned about a detrimental effect on CMT is Paxil (paroxetine).

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37. Your medical alert lists the risk of Pyroxidine as Moderate to Significant. I now have a prescription for Metanx, which includes 25 mg of Pyridoxal 5’-phosphate (B6). Is that the same or a problem?

A dose of 25 mg/day of pyridoxine appears to be of negligible risk. In fact, the most common preventative dose used with other medications such as INH is 50 mg/day. Most toxic exposures are from much higher dosages, mostly of 250 mg or more a day; however, doses in excess of 50 mg/day are unlikely of added benefit to CMT patients.

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38. I am a CMT patient. My doctor prescribed 90-day dosage of metanx for elevated cholesterol. I stopped taking it about 2 weeks ago, and soon after that my body started breaking out in rashes everywhere except my face. It itches and leaves ugly marks like chicken pox, which I had as a kid, more than 50 years ago. I cannot figure out what else might have happened, except for a minor gum surgery soon after, where Novocain (I believe) was used for anesthetic purposes. The only other medication I take is accupril for blood pressure. Do you know if metanx has any withdrawal effects?

The formulation is actually a collection of vitamins intended for patients with high homocysteine levels, an independent risk factor for heart disease and stroke. Most people with this risk take daily folic acid supplements and this formulation appears to be an attempt to supply a more complete but unproven formulation. The benefit is not intended to treat cholesterol per se. The vitamins included are folate, vitamin B6 and vitamin B12, which qualifies the pill as a food supplement and not a drug. The amount of B6 is small as long as multiple pills are not used daily. There is no risk of withdrawal effects and the skin rash described is more suspicious of a drug allergy or a separate viral illness, but a physician should examine the rash to be sure. Novocaine allergy is extraordinarily rare.

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39. Has there been any investigation regarding the use of Methylcobalamin in treating CMT sufferers?

There has been considerable research on vitamin B12 and some forms of B12 such as Methylcobalamin and neurologic function. More importantly B12 levels and other related B12 functions are frequently checked because low levels can result in a variety of neurologic problems including neuropathy. The main benefit is for patients with deficient or low vitamin levels. The benefit to patients with normal vitamin levels and function is not established. I am not aware of attempts to treat otherwise normal CMT patients successfully with B12, but it has been tried in diabetic neuropathy without clear benefit in patients with normal vitamin levels. On the other hand, if there is any doubt when measured vitamin levels are borderline, Methylcobalamin is safe in reasonable doses.

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40. I have had CMT for over 20 years. I also have diabetes and have been on kidney dialysis. I am going to have a kidney transplant soon and would like to know if the drugs are going to affect my CMT?

The issue is complex with CMT, kidney failure and diabetes, all of which can cause neuropathy. There are a few drugs that rarely cause neuropathy, but there is not enough experience to recommend avoidance or a special susceptibility by CMT patients. The first is tacrolimus (FK506, ProGraf) that rarely causes a neuropathy with demyelinating features, probably by triggering an immune reaction. The drug is also under investigation for supporting nerve growth, so the issue is complex. The vast majority of patients have no problems with neuropathy on this drug, but if you use it, the degree of neuropathy-related weakness should be monitored. Cyclosporin A can cause the same problem, but even more rarely. However, immunosuppression is a required treatment in order to prevent rejection of the transplant, so the issue and relative risks and benefits should be discussed with your local physicians. This is probably an example where the benefit is great and the risk is small.

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41. I am a 53-year-old female who was diagnosed with CMT about 13 years ago. I was recently given a prescription for Amerge 2.5 by my neurologist and the medicine made me feel like I couldn't move my legs. I also had severe cramps in my lower extremities. Are those side affects related to the medication?

Naratriptan (Amerge) is a commonly prescribed migraine treatment in the triptan class and is similar to Imitrex (sumatriptan). These agents may have a variety of side effects complicated by the fact that most who take the pill already suffer from an acute migraine. Common and infrequent reactions include nausea, odd numbness, chest tightness, dizziness, drowsiness, and fatigue. There is no evidence, however, of true worsening of weakness or sensory function. Muscle cramps are rarely seen but could be more common in patients prone to cramps, such as patients with CMT.

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42. One of the side effects listed for Prilosec which should be reported to a physician is numbness and tingling of the hands and feet. Since I already have numbness and tingling of the hands and feet, I’m not sure if I should continue taking it. Is there anything on record to the effect that Prilosec is contraindicated for people with CMT?

Numbness and tingling are listed as side effects for a wide variety of medications, but only a small number have been linked with causing or worsening neuropathy. Prilosec (omeprazole) has been reported to cause neuropathy and/or myopathy (muscle disease) in a very small number of patients, but not enough to know if the effect is real or not. It is not known whether CMT patients are affected differently or why some patients are affected and not others—none of the reported patients had CMT. The related drug lansoprazole was reported in 2005 to cause neuropathy in one patient. This fact should be brought to the attention of your treating physician so a decision on the best course of action can be made.

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43. I know that statins are listed on the drug watch list for their possible effect on muscles. However, recently I have been reading that Zetia may also affect people with CMT and other such diseases. I have CMT Type 1A and have been taking Zetia prescribed by my doctor to lower my cholesterol. It has worked as expected, but how do I know if Zetia is having a negative effect on my muscles? I have always experienced general muscle discomforts and pains, especially a lifetime of back problems and compound scoliosis. How can I discern if the Zetia is contributing any more pain to my already evident problems?

Ezetimibe (Zetia) is the first of a new class of antihyperlipidemic agents, the cholesterol-absorption inhibitors. It is known that most lipid-lowering therapies, including statins, fibrates, and niacin, may cause muscle toxicity and Ezetimibe is touted as an alternative. The studies by the manufacturer did not seem to uncover cases of muscle problems but there are now a handful of reports, though not well-documented, with this drug as well. Some theorize that drugs that interfere with fat metabolism may disrupt normal muscle function in a small percentage of patients ranging from 1 in a 100 to 1 in 1000 depending on the agent. Given the current knowledge this drug is still probably a good bet if lipid therapy is needed. The combination of this drug and a statin may have added toxicity but this fact is not well established. There is no known link with this drug and neuropathy or a specific link to CMT but any cause of muscle weakness can hamper function in CMT patients who have weakness as part of their condition.

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44. Is there any information on EVISTA (Raloxifene HCI) and side effects it can have on persons with CMT?

There is no known direct effect of EVISTA (Raloxifene HCI) on CMT patients or peripheral neuropathy. However, deep venous thromboembolism (DVT) is one rare but potential side effect of the treatment. CMT patients with severe weakness, especially those who are wheelchair bound with limited leg movement may be at higher risk and should discuss the treatment with their physician to see if other precautions or preventative treatments are needed.

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45. I'm 37 male with CMT and Crohn’s disease.I take remicade treatments for my Crohn’s. My symptoms are rapidly getting worse. Can the remicade have an effect on the CMT?

Infliximab (Remicade) is a newer and highly promising agent to treat a number of autoimmune disorders including rheumatoid arthritis and Crohn's disease. A small but growing number of cases of neuropathy that began during Infliximab treatment have been reported over the last 2 years. The neuropathies seen are often those considered to be immune-related and may respond to other immunosuppressive treatments. Some of the conditions treated with Infliximab can independently cause peripheral neuropathy; this distinction must be made but can be difficult in some cases: is the worsening caused by the treatment or the underlying disease? Having underlying CMT in addition to these 2 concerns provides added complexity but CMT patients may be more vulnerable if they are already weak. The pattern of neuropathy often differs with these 3 problems (CMT, Crohn's neuropathy, Infliximab-induced neuropathy). If strength is clearly worsening, then these issues should be addressed by the treating physician to determine which is the most likely possibility. Overall, Infliximab-induced neuropathy appears to be a quite rare but valid concern.

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46. I am treating a 20-year-old patient with leukemia. After his 4th dose of vincristine, he had progressive, severe neuropathy in all extremities, dysphagia and dysarthria. EMG studies are consistent with CMT. Genetic studies are pending. Retrospectively, we discovered that his brother had an EMG 13 years ago which was consistent with CMT. The patient is in remission after induction chemotherapy. However, he needs additional chemotherapy. Can you give me any additonal information about the reason that adriamycin is in the uncertain category? Have any patients received high dose cytarabine?

There are a number of similar cases in the literature of patients without known CMT receiving vincristine and developing severe neuropathy after 1 or several courses then later discovering a close relative with known CMT. The association seems to only hold true for CMT1A, the most common form, and HNPP; both are associated with defects in the PMP22 gene. Vincristine in particular is of exceptionally high risk in CMT1A patients and can result in severe, irreversible neuropathy after 1 or 2 standard doses. If your patient has another form of CMT, then the case is reportable. Other drugs on the medication list have less clear associations with CMT and excessive toxicity. Most seem to carry similar risk to others with neuropathy from other causes--diabetes, etc. Both adriamycin and high-dose cytarabine carry possible but much less risk than certain agents better known to cause neuropathy such as platins, taxanes, thalidomide, suramin, and Velcade(bortezomib). The small risk of the agents you mention is based solely on small numbers of possible or probable but not definitive case reports in cancer patients; no reports of use of these agents in CMT patietns is known. This small risk should be weighed against the potential benefits of additional chemotherapy.

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47. My husband has Charcot Marie-Tooth disease. He also has hepatitis C. He has been on Pegasys and Copegasys for 10 weeks now. I think that the effects he feels are more severe than what other people experience. Are there any studies on patients on treatment with both conditions?

The use of interferon in the treatment of hepatits C was a major advance a number of years ago but the treatment has notable side effects, most commonly flu-like symptoms. There is no clear indication that Peginterferon alfa-2a (Pegasys) independently can cause peripheral neuropathy or worsen CMT-related weakness. The only notable interaction is with the treatment and certain HIV-drugs, which I presume are not an issue. Hepatitis-C infection is a much more common cause of neuropathy and one important reason to suppress the virus. The treatment is rarely associated with certain eye and retinal problems that are not at issue in the most common forms of CMT.

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48. Is there any reason why a CMT patient should not take Humira for rheumatoid arthritis?

Adalimumab (Humira) is a recombinant human IgG1 monoclonal antibody that blocks the action of human tumor necrosis factor (TNF), which is thought to be a factor in the joint inflammation in rheumatoid arthritis. This is an emerging and exciting new class of drugs used to treat several autoimmune diseases. Others in this class of drugs, termed TNF-alpha blockers, but not this particular agent, very rarely have been associated with triggering other autoimmune disorders, including in a handful of instances, demyelinating neuropathy. Patients with these other but similar treatments (3 in total at this point) have developed otherwise typical chronic inflammatory demyelinating neuropathy (CIDP), an acquired disease that affects many of the same nerve fiber types as CMT. There is no information about a positive or negative reaction from a patient with CMT on any of these treatments. The risk is quite small but should be weighed against the severity of the arthritis undergoing treatment.

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49. My son is 20 and has just been diagnosed with CMT1X. He also has tremors of the hands. The doctor has prescribed Inderal LA 80 for the tremors. Will this work or have any affect on the CMT. Do you have any other suggestions about this?

Inderal is not associated with causing or worsening neuropathy or CMT. It has many uses including blood pressure control, heart disease, migraine prevention, and to suppress essential tremor. The chance of it working depends in part on the type of tremor and whether it is part of the CMT1X or a separate problem. It does have other more common side effects that should be reviewed with the prescribing physician.

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50. Do lupron depot 3.75 mg injections (1x/mo) cause any know problems with CMT patients? I know it can cause 3 percent bone loss, thus one reason they only administer it for 6 months at time. I have been noticing wasting in my shoulders, hips, arms, under my ribs (front and back), and right calf. My father, 2 sisters (one deceased), cousin(male) and I all have CMT. I also have antiphospholipid syndrome, where my anticardiolipin antibody igm and beta2 glyprotein igm are elevated, which causes my blood to clot. I just recently had a heart attack due to a blood clot.

Lupron is not associated with worsening CMT or causing neuropathy. However, the consequences of altering sex hormones in disorders with muscle weakness, including CMT, are a very active area of present research; however, no recognized treatments or precautions have been accepted at present. Lupron suppresses testosterone levels in both men and women, which is an important factor in muscle bulk. None of the other medications listed are associated with weakness or neuropathy but your case sounds more complex than many because of the antiphospholipid syndrome.

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51. Recently, there has been a lot written about law suits against the manufacturer of Lipitor because it causes peripheral neuropathy. Do you think this is a problem that CMT patients should consider?

This topic is quite controversial. Over the years there have been a handful of single cases which were suspicious that Lipitor or other statins caused neuropathy, but no one thought the issue was very important. This new round of concern is based on a single large study in Denmark that found that people with neuropathy, with no known cause, were more likely to be taking a statin. Others have argued that they could not be sure that there were no other explanations for these neuropathy cases, such as metabolic syndromes or mild diabetes. Unfortunately, lawsuits do not demand proof. The statins are on the CMTA’s drug list, but I think that people with CMT and high cholesterol would be negatively affected by avoiding Lipitor or other statins if they truly need them. If they appear to worsen after starting a statin, the issue should be addressed with their physician. Of course, if they don’t actually need the statin, they should think carefully before using one. Muscle complications are still probably a more important and sometimes overlooked problem with statin drugs.

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52. I was just diagnosed with macular degeneration. The specialist told me there is a new treatment. They inject Avastin into the eye. This is a cancer drug. I read in the newsletter that some cancer drugs were harmful to CMT patients. Do you know anything about this drug that would help me make a decision?

The new and promising drug Avastin (bevacizumab) is not known to cause or worsen neuropathy, but the drug has not been in use very long. Many of the cancer trials used the drug in combination with other chemotherapy drugs that often cause neuropathy, but studies did not find a further increase with the Avastin. There are no reports of neuropathy and Avastin in association with macular degeneration applications. Despite the list of chemotherapy drugs that cause neuropathy, there are many others that do not.

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53. I’m having surgery and will be given Versed. I read somewhere about being careful with Versed. I have CMT 1A and am wondering if that medication will be okay.

I know of no special concerns with Versed and CMT unless it is used for an extended period of time unlike the brief exposure for anesthesia before surgery.

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54. I know that “statin” drugs are used for cholesterol control. I have been taking the anti-fungal drug Nystatin for years to control Meniere’s disease. Is Nystatin a member of the statin family or is it just an accident of name?

Because of the addition of so many new medicines over recent years name similarities are inevitable. The statin class of cholesterol drugs inhibits a critical enzyme in cholesterol production. Nystatin is a completely unrelated antibiotic drug that long predates statin cholesterol drugs and is primarily used to treat fungal infections; Nystatin is NOT associated with neuropathy.

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55. Is there any reason why a patient with CMT should not take anitmuscarinics? In particular, antimuscarinics to treat overactive bladder, such as Vesicare?

Antimuscarinic medications such as Versicare are not known to cause or worsen neuropathy. Other types of neuropathy, especially from diabetes, often impair autonomic nerve fibers and these types of drugs can cause an exaggeration of some expected and predicable side effects such as dry eyes and mouth; however, most CMT patients have minimal or no autonomic impairment and they should not have concerns any different from any other patient without CMT.

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56. My 9 year old son was recently diagnosed with CMT Type 2, x-linked, with central nervous system demyelination. So, in addition to the regular CMT findings, he also was found to have white matter lesions on the brain MRI. We are still very new to this diagnosis, with the initial episode July 2006. Prior to the CMT diagnosis, my son was being treated for ADD. We had taken our son off Focalin XR, 20 mg. in mid-June for a summer rest. The initial CMT episode happened three weeks later. Is this type of medication contraindicated with CMT?

Dexmethylpenidate (Focalin), approved in 2001, is chemically similar to Ritalin, a drug familiar to many. X-linked type CMT 2 is an unusual form; CNS demyelination is also seen, but is unusual as well. This class of medication is not known to affect CMT or cause neuropathy and is not contraindicated in CMT in general. It can decrease appetite and lead to weight loss. It may also enhance the risk of seizures in susceptible individuals.

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57. I recently read in Parade Magazine about a new vaccine against shingles, Zostavax. Patients 60 years of age and older are advised to have this. Is there any evidence that a person with CMT should not take this?

The new Herpes Zoster vaccine (Zostavax), intended for adults over 60, was recently FDA approved, but there is still somewhat limited experience with it. However, the published results in the New England Journal of Medicine last year are very promising. The vaccine was studied in about 38,500 adults, half of whom received the vaccine; the subjects were followed for an average of 3 years. Subjects who received the vaccine were half as likely to get shingles (Herpes Zoster) and much less likely to develop postherpetic neuralgia (PHN), the painful form of neuropathy limited to the region of the shingles. It appears that everyone who developed PHN actually had true shingles, despite the vaccine and not because of a vaccine reaction. There is no evidence that CMT patients would fare differently from others and PHN can be particularly painful for these individuals. There is no mention of whether any CMT patients were included in this large trial.

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58. I have reviewed the Medical Alert list and the Frequently Asked Questions and have not seen information about Effexor being associated with neurotoxicity. Is it safe for a person diagnosed with CMT?

Venlafaxine (Effexor) is a popular and widely used antidepressant that is also used to treat neuropathic pain, especially well studied in patients with diabetic neuropathy, although the drug has no current specific FDA indication for this use. It has not been associated with worsening CMT neuropathy. The drug does have a variety of side effects and unusual complications that should be considered before use or withdrawal of use. The drug appears to have an increased risk of neuroleptic malignant syndrome and possibly serotonin syndrome, emergent conditions that affect muscle, but this risk is not further increased, to my knowledge, by having CMT.

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59. Is the combination of Verapamil and Avapro as blood pressure medications considered neurotoxic? I take the above medications and my symptoms appear to be worse.

I know of no evidence that either of those drugs produces worsening of neuropathy either alone or in combination.

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60. My 18 year old daughter has CMT1A with relatively mild-to-average symptoms of CMT. She took a meningococcal vaccine and a flu vaccine which are recommended for freshman college students staying in dorms. (She has been taking the flu vaccine for the past several years with no adverse reactions.) Nine days later, she started having extreme tingling sensations in her hands, feet and her tongue; as well as severely increased weakness. She fell 6 times while walking one block. I took her to the ER. They ran several tests and couldn’t find anything wrong in the blood work or in the urinalysis. Could the vaccine have caused these symptoms in a CMT 1A patient? If so, how long should the symptoms last? They started 5 days ago, with some slight improvement. She still has the tingling sensation in her feet and occasionally in her hand. She is now able to walk short distances with some assistance.

The story of vaccinations and neuropathy is a long and controversial one. Some vaccinations in the past (swine flu vaccine in the 1970s) have prompted concerns of certain vaccines triggering an immune-mediated abrupt neuropathy (Guillain-Barré syndrome) in otherwise normal people but most associations have not been proven after larger scrutiny. Neither the meningococcal or current flu vaccines are specifically associated with neuropathy but the flu vaccine is different every year. There is no evidence that vaccines affect the CMT genes directly but the issue has not been studied. But, if an immune attack on nerves is triggered in a CMT patient, any nerve damage may be additive to the underlying neuropathy. The process, in general, lasts for 1-4 weeks and then improves depending on the severity of the process.

Guillain-Barré syndrome (GBS) can occur in CMT patients; it is controversial whether the incidence is higher than for the general public. If it does occur, the diagnosis and treatment are the same but the CMT makes the diagnosis more difficult. It is suspected but unknown whether a mild version of the process commonly occurs because these patients tend not to go to a doctor; however, a mild form of GBS in a patient with underlying neuropathy from CMT could lead to the symptoms presented. Nine days after vaccination is a reasonable time frame but we have no means to prove the association.

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61. I have been on Prevacid for years. I switched to Prilosec recently. I then found out they were on the Medical Alert list. I told my doctor and she switched me to Protonix, which is not on the list. However, she said it is in the same class of drugs as the two on the list. Why would that happen?

There is very little information about this issue, especially noting the large number of patients taking these drugs. The two mentioned are the only ones reported on in the literature, but you are correct to observe that there is no reason why the others should not have a similar risk even though the association has not been noted.

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62. My mother and I both have CMT. She passed away last June and was debilitated for several years prior. My condition has been worsening at an enormous speed. After her death, I pored over some of her books (she was a psychiatrist) and found that Benzodiazaprines are very effective in treating pain. I am currently taking Klonopin and Cymbalta. I haven’t seen anything in recent literature about benzodiazaprine. Has research changed those earlier findings? As far as the shooting pains, Cymbalta has almost completely taken them away. Is there a generic form being developed?

Cymbalta (duloxetine)is one of the few medications that went through the lengthy process to receive FDA approval for neuropathic pain., specifically for diabetic neuropathy, but is generally used for any type of neuropathy-associated pain. The drug was approved in 2004, so it has quite a while to go before legal generics can be sold in the US. Duloxetine is an anti-depressant and not a benzodiazepine, but the drug has been studied to treat anxiety as well. Klonopin is a benzodiazepine.

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63. I am a 25 year old who was diagnosed with CMT by EMG. My doctor also diagnosed me with Charcot joint, osteoarthritis, and lumbar disc syndrome. I have a severe crippling disease that has gotten progressively worse. I have had numerous fractures and sprains throughout my lifetime, and a few years ago I had a deformed bone taken out of my right foot and screws put in to tighten my ligaments. My doctor has me on 20 mg of methadone for long-acting pain relief and Vicodin for breakthrough pain. I also take Valium for anxiety. The pain has gotten a lot less, but since starting the methadone, I have been waking up with numbness in my hands and my hands in a clawed position. The doctor says that in order to stop this medication, I must be slowly weaned off of it. Could the medication be making my CMT progress, and how safe are narcotic treatments for long term use? I have tried Neurontin with little or no relief.

Contrary to public opinion, except in the case of over dosage, oral narcotics such as Methadone are some of the safer medications in use. I know of no evidence linking their use to worsening or causing neuropathy, abnormal muscle cramps or muscle spasm; however, the timing raises the question in this case. Your physician is correct that too rapid of a withdrawal can cause unpleasant symptoms. Intravenous heroin has very rarely been linked to nerve injury, but almost certainly because of toxic and unintended side products in the injections used by some addicts. Methadone and Vicoden pills have no such concerns. Certainly, the underlying problems of CMT, Charcot joint, arthritis and spine disease must also be considered by your physician. Simple carpal tunnel syndrome is common and treatable in patients with neuropathy of any cause, including CMT. There are other medications not mentioned that can possibly cause the described symptoms, especially certain nausea medications and some others. Having your physician see the clawing and examining the hand is needed for specific recommendations, but the narcotics would be a highly unlikely underlying cause.

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64. I recently had an endoscopy and was told to start taking Aciphex for my gastritis and duodinitis. Is this a safe medication for CMT? I see that Prilosec is on the drug list. Is Aciphex a similar compound?

Aciphex (rabeprazole) is in the same class of drug as Prilosec (omeprazole) and Prevacid (lansoprazole), both of which have very rarely been associated with causing peripheral neuropathy. Even this association is still preliminary and not well accepted, however. I know of no cases associating neuropathy with Aciphex to date but neuropathy is listed in the company information as a very rare association (less than 1/1,000) from its clinical trials conducted before drug release. It is not known whether Aciphex also carries the same small risk as the other drugs in this class, but it is possible. There is no information on whether CMT patients are at more risk than others. The small risk must be weighed against the drug indication. Definite gastritis or duodinitis is a much stronger reason for use and for potential benefit than simple uncomplicated heartburn.

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65. A man is concerned that the drug his oncologist wants to put him on might be related to Vincristine. It is Vinblastine. Could you let me know if he should be concerned?

Vinblastine is closely related to vincristine. Although there are no specific reports of vinblastine toxicity in CMT, it likely is a very high risk agent, especially if the man has CMT1A. Vinblastine also causes neuropathy in individuals without existing neuropathy. If the man has another form of CMT, the risk is less clear but certainly the oncologist should consider whether equivalent other drugs are an option.

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66. Are there nutritional supplements and/or herbal supplements that should be avoided by a person with CMT? Can increased doses of Magnesium Citrate cause neurotoxicity? My chiropractor has me taking MyoCalm PM as needed for muscle tension which contains Magnesium Citrate 150 mg and Calcium Lactate 75 mg as well as other herbs. I reviewed the toxic drug list and did not see any mention of supplements.

There is very limited information about nutritional and dietary supplements and peripheral neuropathy. I know of no suspicious or theoretical problems with Magnesium Citrate or Calcium Lactate. There were a few reports of sudden neuropathy with St. John’s Wort in the late 90’s, but very little since then. Podophyllin resin is clearly neurotoxic and is contained in certain roots used in Chinese herbal remedies, but no longer in Western supplements since the 1980’s. One problem is that the full ingredient list in some herbal supplements is not available, accurate or required.

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67. Can you help me figure out the risk factors of taking Zetia and having hepatitis C?

There are no reports to date of ezetimbe (Zetia) and neuropathy or nerve toxicity, but similar to all cholesterol lowering treatments, muscle toxicity can occasionally occur. The drug works differently than the statin class of drug, although Vytorin contains both ezetimbe and a statin. Hepatitis C, on the other hand, is a common and important cause of neuropathy.

Zetia can cause toxicity to the liver, especially in patients that already have liver problems, such as chronic hepatitis C. An internist or gastroenterologist would be better to consult about these hepatic (liver) issues. I do not know the relative risk in this setting that appears to be separate from CMT.

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68. I noticed on your medical alert page that you put amitriptyline in the negligible to doubtful risk category. I definitely had a very bad reaction to it. To date it was the worst of any other meds I have taken for CMT nerve pain. I have CMT and have tried many medications to ease the neuropathic pain. I have had little success. Vicoden is the most manageable without any major side effects or thought-process disruption. Neurontin caused me to break out with very painful cysts on my face and did little to ease the nerve pain. I recently was prescribed amitriptyline. The very first dose of 5 mg caused some weakness in my legs and increased back pain. On the fourth day, when I increased the dose to 10 mg, I suffered such severe back and leg pain that my daughter took me to the emergency room. By the time I returned home (7 hours later), my pain had eased quite a bit, so I went ahead and took the amitriptyline as prescribed when I went to bed. Within an hour I was in horrific pain again, lasting about 6 hours. Needless to say, I will not be taking this drug again.

The painful reaction experienced is a very unusual reaction to Amitriptline (Elavil). The drug is on the negligible list only because of some very old and unconvincing reports from the 1970’s. There are other common side effects attributable to predictable blocking of autonomic nerve signals that cause dry eyes and mouth and bladder complaints; increased pain and weakness are not typical side effects. Drowsiness is also common. The drug is still frequently used to treat the symptoms of neuropathy as long as the common side effects are tolerable; there are other similar drugs available with fewer side effects. However, the drug appears to be intolerable to this patient and probably best avoided. I have found no other similar reports of this kind in a review of the North American CMT database registry.

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69. I have CMT and had breast cancer a few months ago. The oncologist wants me to take Arimidex. I am rather concerned because of the side effects that can occur with any patient. Do you have any information about Arimidex and CMT patients?

There is no known effect on CMT or neuropathy from Arimidex or similar breast cancer hormone treatments. There are some possible beneficial effects of some other hormone blockers, especially progesterone blockers, in animal models of CMT1 and this question is an active line of research, but the effects from Arimidex are likely to be clinically insignificant; the drug has demonstrated benefits in the proper breast cancer setting.

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