Antidiahreal help with mestinon
 

I sure need help with the tummy-bowel aspects of mestinon. The first year I did pretty good but not now. If I have Lortab in me for my pain on worse days it is better. But if pain is down or the dose hits where pain med is worn off watch out. I literally have exploded all over not making it to the potty (sorry about that truth). I dont have the strength to clean up such messes nor do I want the awful cramping pain that goes with it. Also I dont want to use my Lortab to counter the diareah.

Someone suggested Imodium but I dont think that calms the nerves that are making my bowels do this. I do not think Imodium is a good choice for me. Does anyone have things they use succesfully?

Annie59

Hi Annie,

I have the same problem. I've always used probanthine tablets, when I'm bad i take one 3 times a day. Its not a cure but it certainly helped me out when I'm bad.

ProBanthine is no longer commonly available in US. A common anticholinergic would be Bentyl here or hyoscyamine (Levsin)

Seems counter productive to me to take an anticholinergic drug to deal with cholinergic side effects from a cholinergic drug.

But then I don't know that much about MG to be able to comment further than that.

Imodium is related more to the opiate family but it also has a mild anticholinergic action (dry mouth, blurred vision etc).

Annie, You really need a doctor to advise you on this. Why? Because certain anti-diarrheals can cause a buildup of meds in your body. It sounds like you are on more than one medication and, again, you need a doctor and a pharmacist to advise you on that.

Ditto to what Mrs. D. has said.

Please contact your doctor.

Annie

I have a suggestion for something that has worked for me.

Since I started taking Vitamin B-12 (Methyl B-12 form) in larger amounts (1 to 3 mg per day) my diarrhea has been much less. In recent weeks when I increased to taking 3 mg of B-12 daily I had a regular bowel movement (sorry if this is gross). This is my first regular bowel movement in over a year! I felt like celebrating. I haven't had time to learn about B-12 to see if others have this effect from taking B-12. I have been keeping records and I am positive it is the B-12 that is helping me, since every day I take 3 mg I have a huge improvement and I don't have to plan my day around being near a toilet. Hooray!

Does anyone else notice this effect of vitamin B-12?

Oh, I originally tried the regular B-12 and it doesn't seem to be helpful, at least I didn't notice any improvements, it is specifically the sublingual METHYL B-12 that helps. I also see a huge improvement with my MG, I don't have as many of those days where I have to spend the day resting in bed.

Sorry you guys have diarrhea, it is not fun at all.

This symptom of diarrhea, was illustrated on an episode of Mystery Diagnosis on Discovery.

The afflicted woman had diarrhea for YEARS... went to over 10 doctors who could not find anything wrong with her. She eventually started losing her eyesight, then her balance.

She finally consulted a physician she saw on another episode of the program, and that woman doctor did the Romberg's test on her in the office (it is a balance test that you close your eyes and try to remain standing). When the patient failed this simple test, they did a B12 serum level that was in the 280's (which according to most labs in US is STILL considered NORMAL!)

Treatment with B12 cured this suffering patient finally.
So yes, it happens. Current medical education (which doctors don't get or ignore) suggest treatment for anyone under a serum level of 400.

Annie,

My husband has many of the same issues w/ the Mestinon. I wouldn't recommend Immodium - he took it once when we were going to be somewhere that wasn't conducive to quick trips to the bathroom. It worked, but later that night he had SEVERE cramps, so bad I almost took him to the ER. He's had pretty good relief using probiotics but check w/ your neuro & get the good ones - not the stuff they sell at Wal-mart!

Good luck - Alison

Sometimes 1/2 of a tablet of Imodium (1mg) works for many situations. I think some people may become constipated on the suggested doses.

I have a congenital GI defect that sometimes makes me very ill...and I have found 1/2 Imodium is plenty for me!

It is also a good idea to try 1/2 tablet if you are 50 or over.
Older patients are more sensitive to drugs.

My diarrhea started with taking Mestinon...maybe I am B12 deficient as well, I haven't been tested recently. All I know is the B12 helps me greatly and I am going to continue taking it.

Thanks Mrs. D.

I really can't offer any advice on MG, I have'nt been diagnosed yet but I can speak first hand about low B12 levels.

I was admitted to the hospital this past June with extreme body weakness and severe muscle spasms.

After a gamit of lab studies, an EEG, CT Scan, and an MRI they detected a severely low B12 level . If your B12 level is to low it can cause very serious neurological and autonomic nervous system problems. A low B12 level can cause permanent damage to the myelin sheath covering your nerves. The treatment is simple. You take an oral supplement and a series of B12 injections for the rest of your life.

Diarrhea, hair loss, muscle spasms, loss of appetite and weakness are just a few of the side effects of a low B12 level.

Some of the symptoms go away quickly, some take longer, some may never go away. It all depends on how long your level was below normal. Everyone responds differently to the treatment.

While I have had some improvement with spasms, the overall body weakness remains a problem for me. As a result the neurologist I saw in the hospital ordered the acetylcholine antibody tests during my very first post hospital follow up. They came back negative, I've also had an EMG which was normal as well. He requested approval for a MuSK antibody test last month. My insurance company denied it due to a lack of clinical evidence for the test. I still have all the symptoms of generalized MG. I see my PCP again next week and my neuro again next month. I am unsure of what the next plan of attack will be.

Sorry this ended up so long, hope it clears up the B12 thing a bit.

Rachel

annie, the doc is best to discuss these things with as mentioned, but when I used mestinon, I kept breaking down the dose in mg until it was tolerable.
I wouldnt take a 30 mg tablet at once, Id break it into 4 pieces and do it over a couple of hours and I didnt have stomach problems anymore.
Sometimes it can be real close, just 10 or 15 mgs more than you can tolerate can cause the problem.

Yogurt and small doses work for me
 

When I started on Mestinon I had severe diarrhea and cramps. I started eating yogurt (I've been using Activia, but I'm not sure whether the type matters) and slicing my tablets in half at the same time. One or both of those worked.

With the half-tablets of Mestinon I find that I need less than half the frequency. I was taking 60 mg every 4 hours and found that 30 mg every three hours was fine.

Thank you all for the thoughts. I did ask my family doc and he said try imodium and I pressed my neuro about it and she just said 'just stop your mestinon then.' Now I hope you are as stunned about this as I was but at the same time this is her. I have discussed her with the director of the MGA for my state and she said it souunds like she doesnt know much about MG. She is a neuromuscle doc. I said to her what about my breathing? She is such a disconnected doc.

I am unable to take any drugs that have dry mouth or thirst as a symptoms. I have severe Sjogrens. It is all I can do to drink lots of water everyday to to just keep my eyes and throat from going into pain. The eye pain can be excrutiating. It also affects my lungs making all the soft tissues dry so that is a concern too. If I get very dry from a drug like that it can affect my breathing.

I have, as Allen L suggested broken the pill down. For a pulm test using the mestinon I took a full 30mg over 30 mn and ended up vomiting on the way home. It is so disappointing. When I was first diagnosed with probable MG I using 60mg 3-4 times a day and did not have this. I have elevated parathyroid (secondary hyperparathyroidism) since that became worse again. I think that may have something to do with it.

My meds are limited. I take mestinon and Lortab and tons of Systane for my eyes gel and drops.

I know it is important to ask ones doc but I find that if I have some idea of what others are using it gives me a place to start especially since the dry mouth thing is an issue.

Oh and I do use a probiotic.

Annie59

I'd get a Vit D test. Secondary Hyperparathyroidism can be due to Vit D deficiency.

I take 1 Fiber choice AM and PM (start with AMonly at first) FANTASTIC results! NO more diarrhea and its like being 5 yrs old all over again with PERFECT BM's. Every one I have recemmended this product too have come back telling me of their amazing results-and it is amazing when you have not had any regularity for months or years. COmes in yummy flavors-chewable. Hope it works for all others.

:rolleyes:Hmm-docs sure can make some weird remarks-just have to blow them off and move on. I have a trrible dry mouth condition ( asymptom of Lambert eaton Myasthenia and not regular MG-just an interesting tidbit) The mesiton causes excessive "lubrications" and it has given me back a wonderfully moist mouth again. No water or fluid could ever help in past. What level of Mestinon are you taking? I hated the dry mouth issues and know exactly what you are NOT saying out loud- Hope the Mestinon helps soon.

Annie, have you been tested for Celiac Disease? If you have and you had a negative result, you may still be gluten sensitive. Try a gluten-free diet for a month and see if that helps. A GF diet will also help get your vitamin and mineral levels back in line, as an internal reaction to gluten will cause the lining of the intestine to be unable to absorb all of the nutrients that you eat.

I've checked with the Mestinon manufacturers, and they assure me that they don't use gluten in their formulation, but I started getting body sores again (I have the skin manifestation of CD and am also allergic to wheat), so I'm wondering if they might not use wheat in some other part of the facility, or if it is somehow in the dessicants that are included in the pill bottles. I'm still investigating all of that, so I'll get back to you when I find out more....

You may also be taking just a slight bit more than your body needs, and you may be having a mild cholinergic reaction. It's possible that you need to take a smaller dosage; you may be able to offset that by taking it more often during the day. I seem to remember reading that works for many people.

Yes it is vit D defieciency caused. We are still working on this issue. I am unable to take vitamin D by mouth. It makes me alot sicker. I was diagnosed in 2006 with severe deficiency and the parathyroid issue. They wanted me do the big medical doses of 50k. That is when the circus began. It is really hard to find Endocrinologists who know this stuff well. I have tried 3 different endo and still they dont get it. After the last one I had to set it aside and focus on the neuromuscular issue. I thought an answer was found but had gotten a young student instead of my regular brilliant internist. Now she is back so I am hopeful it will get sorted out. I thought I could get injections but the last Endo said they dont make them anymore.

The good news is that this summer I found a way to tan outside and use cold water on my legs that keeps me cool enough so I dont flare. The bad news is that as of this past year even when my vit D is in the normal range, low normal, the parathyroid wont go back to normal. That is new. Endo thinks it is because my D levels jump around. Other than farmers and surfers I am not sure most folks dont have levels that jump around. Yet she is not scheduling me for a follow up! This feels weird to not have this issue followed. For now I have to focus on neuro issues. When winter comes it will be a bigger issue. I drop fast in the winter.

Annie59

About Dosage and celiac. I was tested for it back in 2005. The tests was negative. But when I was getting worse and having trouble getting groceries I went some time without my favorite breakfast of wheat toast with peanut butter. At some point it became clear that not using that bread as a big source of my daily food had me some better. At this point I have to focus on getting this new neuro to work out so she puts in place better treatment cause I am so much worse including my breathing. Just a long phone conversation can get me into big trouble these days.

I am working with local family doc who is from Asia who practices acupuncture as well. He is helping me with my food sensitivities. He can do the full body acupuncture a Chiropractor wont. He is very very talented. He helped me enough that I had a normal Thanksgiving dinner last year for the first time in 3 or more years. Gluten free is more than I can handle right now.

I can only take about 5-7mg of mestinon a day. That is not near enough. Part of the issue is that if I take the 30 or 60mg I used to I now cant sleep. I feel this is related to the parathyoid issue being worse at the same time. The first year it wasnt the case. I woud love nothing more that to take the 60mg I used to. The first year it didnt do these things to me. But the parathyroid changes my nervous system. It makes it more sensitive. I am sure that is why is the pain narcotic counters the diareah because the mestinon is over stimulating some nerves in that area. It seems to do a similar thing to my urinary track too. Just the last 4 days have seen an improvement. But during the last 2 weeks I have gotten more sun than usual so I suspect my vit D is higher and parathyroid down.

Annie59