I was wondering if anyone has experience with whether narcotics make MG worse. As I mentioned in my introductory post, I went about 15 years misdiagnosed. At some point during that time I was put on tramadol for the muscle pain I was experiencing. Eventually the tramadol was switched for OxyContin, and over the years it got increased to 30mg every 8hrs.

I've asked the pain management doctor since my diagnosis if we could try cutting that back, but he doesn't want to make changes until everything else is more stable. I'm afraid that the narcotic might be one of the reasons I'm not stable, however. The problem is that my neurolgist doesn't have much experience with narcotics and is deferring to him as the pain management expert, and he's admitted I'm his first case of MG. I'm not sure if I should get a second opinion or what.

My neuro wanted me to talk to my Pulmonary Dr. before taking any opioids. My Pulmonary Dr. is also my primary care Dr. He gave me the ok after breathing tests and he monitors me regulatory. He knows that my breathing is impaired because of my week diaphragm.

If I were you, I would find a Pulmonary Dr. for advice.

Tony

Its kind of funny that you mention that. My previous GP was a pulmanary specialist I was sent to when my peak flow test showed I had asthma. After a lot of testing, he concluded that I didn't have asthma. I realize now it was the MG causing the low peak flow. He's since left the practice and I've found a new GP, but maybe I should see one of his associates.

I was searching also about meds to avoid in MG. I found a couple of sites that list them. Most were the same on all sites. **
Hope this helps, and good luck!

Thanks for replying, even though the link got cut off. I've probably seen the list you linked to though, as I think most of them list painkillers as something to be cautious about.

yes, among other meds. This site does not let you post web sites until you post at least 10 times. I copied them and pasted them for you. I hope they dont erase these. Hope it helps.....Royce



Aminoglycosides: Tobramycin,
Gentamicin,
Streptomycin,
Kanamycin,
Neomycin,
Amikacin,
Paromomycin Amitriptyline*, Bactracin**
Barbiturates*
Beta-Blockers: Propranolol,
Oxprenolol,
Pindolol,
Practolol,
Sotalol,
Timolol (ophthalmic)** Chloroquine* Chlorpromazine**
CNS Depressants* Colchicine
Colistin Colistimethate** Corticosteroids** Decamethonium Diphenhydramine* Duiretics*
Droperidol* Echotheophate
Emetine* Erythromycine** Ethosuximide*
Gallamine
Haloperidol*
Impiramine*
Lidocaine
Lincomycin
Lithium**
Magnerium Sulfate Muscle Relaxants* Narcotics: Morphine,
Codine,
Meperidine, Hydromorophone,
Opium (Pantopan (R))
Pancuconium Paraldehyde* Penicillamine
Phentyoin Procainamide**
Procaine
Quinine**
Respiratory:
Depressants* Sulfonamides** Sedatives*
Sodium Lactate** Succinylcholine Tetacycline**
Thyroid:
Replacements Tranquilizers* Trihexphenidyl Tubocurarine
* theoretically may worsen MG - no clinical reports ** worsens MG or causes MG-like syndrome Henry Ford Hospital 1993

BackwardPawn, Everyone reacts differently to meds. I know of another MGer who also has pain issues and is fine with OxyC. Tramadol, however, is usually NOT good for MGers. It interferes with acetylcholine production.

Have you had your CPK (creatine phosphokinase) checked? How about your vitamin D level? Muscle pain is a classic symptom of a vitamin D deficiency. It sounds like they didn't do enough investigating before they threw a pain med at you! It's always a good idea to find out WHY something is going on before you treat it.

Going off of those pain meds can cause a rebound in symptoms, so going off has to be done carefully. A pain specialist should work WITH your neurologist to figure out what to do. Problem is that doctors often don't know how to work well together.

A 2nd opinion is not a bad idea, if you can find an MG expert in your area.

Good luck with figuring out what works for you.

Annie

I don't think they've checked the CPK levels, but I do know I'm chronically low on Vit D. I was supposed to have the Vit D checked a month ago, but nobody could get blood or start IVs anymore so they had me get a mediport. Now I need to find a lab that can draw blood from it.

My options for neurologists locally are pretty limited, but I think the neurologist at UMD is very good. Locally, there is one specialist that I know of, but I was a patient of his associate for over five years, during which time the MG was completely missed.

The MG was finally diagnosed by a young doctor from a different practice, but only after he sent me for needless surgery without telling the surgeon he suspected MG (which led to a breathing issue). At that point my GP tried to get me in to see the specialist, but I was told I that I already see the senior doctor and couldn't switch. After an argument, I'm now persona non grata at the entire practice (there's really only two major practices in the area). During this time, my pain specialist was telling me that he thought my current diagnosis (ankylosing spondylitis) was wrong and I should be treated by a research hospital. I took his advice and found a neurologist at UMD.

At UMD, they started me on IVIG, PLEX, prednisone, cellcept, and eventually rituxan, but ended up deferring to the pain specialist for the pain meds. I'm anxious to get to a point that I can have the thymectomy, though, and I'm wondering how much those meds are contributing to the MG. Sorry for the really long answer...I've just been going to neurologists and orthopedics since I was 18 and telling them something is wrong, and it took until I was 30 to find out I had MG, so I've been put on all sorts of meds in the meantime that I should never have been on.