Hi all,

I normally post on the PN forum since I have PN and severe autonomic neuropathy. I come to you all today because I am being considered for treatment of my autonomic neuropathy with Mestinon...which of course is commonly used for MG.

Mestinon has been found to help with orthostatic hypotension, tachycardia, and gastroparesis...among other autonomic dysfunctions. My condition has become quite debilitating after 17 years and my current medications are just not always effective enough. So we're hoping the Mestinon will help improve the quality of my life.

My doctor has just decided to go ahead with a trail but insists that i have a doctor closer to me (the neuro is 3 hours away) for close monitoring due to side-effects. He even asked how far away the closest ER is from me. So now I'm a bit concerned about how serious the side-effects really are. At the first discussion he really didn't make a big deal of side-effects and said diarrhea was the most common. Well, certainly that's not why he asked about an ER or having another doctor to monitor.

So I'm here to ask you all what is the most problematic side-effects and what else I should be aware of? Any and all input would be helpful.

Thanks in advance.

When you first start taking it until you develop a tolerance you will probably have stomach pain cramping and diarrhea. It can increase secretions, but that is not a problem for people with dry mouth. No extreme side effects unless you were to really overdose on it.

I have been on Mestinon for about 13 years and for me, the worst side affect are the gastro. Mestinon is usually taken as 60 mg about each 4-6 hours but can be taken closer together if you and your doctor agree. Also, you can split the dosage and take 30 mg every 2-3 hours. If you take too much mestinon, the side affects are muscle twitching, possible drooling and eye twitch. However, mestinon wears off quickly and the symptoms should be gone within 2-3 hours.

As I said, the gastro side affects are the worst for me and they are usually cramping, loose stools and possible uncontrollable diarrhea.

If you can think of the mestinon as speeding up your muscles and think of the side affects that might have, you have the side affects from mestinon. However, without the mestinon, I have no quality of life because my muscles hardly work at all. I have worked out what works best for me and I have very few side affects.

You do have to work closely with your doc until you get the proper dosage for you because everyone can handle it differently.

Good luck and I hope it works for you.

Thanks for the replies!!

Being that my neuropathies are from damage due to the autoimmune condition, Sjogren's (with dry mouth/eyes), the extra secretions would be welcome.

The doctor mentioned the diarrhea but after 17 years of constipation due to gastroparesis (delayed emptying), I can't imagine it would be a problem either.

It actually sounds like a life-saver.

Does anyone have problems with high BP or heart rate?

I already have some mild fasciculations (muscle twitches)...but not bad. Will these likely get worse?

My BP is extremely low and I also break my tablets and take every two hours to keep from getting the highs and lows of a higher dose less often. I do have an occasional mild twitch, but don't know that I can blame that on mestinon. May I ask how you were diagnosed with Sjogren's ? I had positive SSA/RO antibodies, but have not officially been diagnosed with anything. The lab results say that these are an indicator of a connective tissue disease such as Sjogren's or lupus.

Also, what is PN? I have been diagnosed with Lems, but have been trying to unravel the assortment of additional symptoms I have that have not yet been addressed.
Thanks for any answers and hope that mestinon works well for you. It helped me survive until I got my Lems diagnosis.

When I have too much Mestinon I get numbness and tingling in my mouth and tongue. I can also get stomach spasms instead of diarrhea. Everyone's symptoms are different. Good luck to you, I hope it works.
Sandy

en bloc, At a really high dose, mestinon can cause a cholinergic crisis which weakens muscles, breathing ability and other symptoms. That would need to be treated in an ER. I doubt your doc would prescribe enough to cause that but I am not a doc and don't know your situation. At a slight overdose you could feel muscle twitching and other side effects mentioned above. I think mestinon is pretty benign once you see how it feels and learn how to use it. Talking with your docs to adjust dose and frequency of dose will get you there quickly. My neuro prescribes it for several neuro-muscular diseases including MG and ALS.

I'm careful to never take more than the 60mg per 4 hours my neuro prescribed. I've also been told it's OK for me to take 30mg every 2 hrs if I feel that works better. I bounce between the two schedules depending on how I feel. If I'm not doing well, I take the higher dose and wait longer for the next dose. I have felt some muscle twitching from it but that passes fast enough to not bother me much.

I can't know why your doc would be so worried except it sounds like he's recommending mestinon 'off label' for a condition it isn't routinely used for. If you were really worried, it wouldn't be unthinkable to 'camp out' in the hospital cafeteria for a few hours when you took your first dose. Just an idea.

Good luck. It doesn't help everyone who takes it. I hope it helps you.

I take 60 mg every 4 hr and the time release 180 at night. I mistakenly took a double dose one time of the 60 mg and did not have any ill-effect. In fact, I have never had a bad side-effect from mestinon.

I have MG. I think I have some autonomic dysfunction as well - dizziness, balance problems, tinnitis, profuse sweating, body temperature increases/fevers, abdominal cramps and diarrhea. If I miss my mestinon dose, the diarrhea starts.

Good luck
kathie

I'm sorry, PN is peripheral neuropathy.

As for the Sjogren's, my blood work is negative for SSA & SSB (up to 40% have negative labs), but I had a lip biopsy that was very positive...and also a positive Schirmer's test to measure dryness in the eyes.

A positive SSA and associated symptoms (dry eye, & mouth along with joint pain, fatigue, etc) are usually enough for a definitive diagnosis of Sjogren's. Many doctors do request a lip biopsy for confirmation.

In my case the Sjogren's has attacked the autonomic and dorsal root ganglia along the spine and caused not only peripheral neuropathy pain, but significant autonomic neuropathy that includes severe orthostatic hypotension, brady/tachy heart rates (i have a pacemaker), gastroparesis, cardiac vasospasms, temperature dysregulation, heat intolerance, difficulty initiating urination and completely emptying...the list goes on. The low BP upon standing is my most debilitating problem as I literally cannot stand at times for more then a few minutes. That's why we are trying the Mestinon...because it can help to increase BP without causing high BP when laying down. And it can help with the GI movement.

Thanks so much for all the input.

My doctor said we would start this a low doses until we see how I respond. It is not widely used (yet) for this condition, but the Mayo Clinic has done studies with some success.

Based upon what you all say, it sounds like I would not have too much of a problem and it something that is fast acting, but short lasting so if there was a problem it would only be for a short time. Then we could adjust does and try again.