Pyridostigmine/Mestinon limits
 

I have been unable to locate any information about the effects of Mestinon for someone that doe not have MG. I am looking for something more concrete if possible then just assumptions. I am aware of the not enough or to much results for those with MG and assume the same for those without.

Basically if you do not have MG and took Mestinon, how much could you take before it messed you up?

I have accepted my diagnosis (seronegative) but would like some other "proof" if possible for family members. They are great in supporting me and do not doubt it, I just would like to have something else for them.

I have intentionally left my dosage out. But I take a fair amount of Pyridostigmine every day. It really helps me and I would be in a bad place without it.

Thanks

I would be interested too. I don't even have a seronegative diagnosis. But I managed to talk my GP into trialling Mestinon over a year ago.

When I started at 30mg, and the effect was VERY positive, I thought I was cured, sort of.

However I have now had to increase that to a much much higher level and although the effect is still positive, it is not keeping up with the progression of the disease (whatever it is that I have) and I am concerned that I shall be hitting the upper limits of Mestinon, even before I get a confirmed diagnosis.

mestinon
 

I was in the hospital for the 2nd time in Jan this year. The resident Nuro kicked my Mestinon up to 12 x 60 a day, plus 1 timespan at night. I will admit, now, 2 months later, I'm doing ok. I thought I was above the limit. No real problems except some gastro upset. It is tolerable.
I don't know the upper limits either. I have generalized MG.
FREDH

My nuro told me up to 1100mg/day for a short while was considered SAFE as long as you up in small increments and same goes for weaning off, but you should take some kind of a strong ANTIACID for stomach upset, I'm taking Pantoloc 40mg twice daily one in the morning and evening and works great.

Now for Pred the highest of been is 60mg/day make sure to take 1st in the morning as early as possible if you take them to late in the day you'll have a hard time getting to sleep! The other the sooner you can get off them the better, and don't wean off more than 10% off the daily taken dose every 2nd week...I'm down to 4mg/day and finding it tough!!! My Doc had told me that once you get under the 5mg dose it would get tougher until my adredeline gland picks up the slack...I feel like I'm running out of gas at times! since I've been on the lower dose but takes a couple a days to adjust to the new dose.

Hi Snoel,
I fully agree with the max limit of 10 % at each step for Pred tapering. And that should also be valid below 5 mg. I was down to 4.5 mg/d when I had a relapse for another reason 6 years ago and I haven't recovered yet. I'm presently at 6 mg/d and one Plex every two months.
Maurice.
PS: Now I know the reason for your enormous Mestinon dosage...

Snoel, This is a bit aside, but with that kind of antacid use, you need your B12 levels checked. You can't digest your food well enough to obtain B12 from your food with so much antacids. It can also reduce albumin, iron, calcium, etc.

Baddad, As far as to much Mestinon, most research says to keep dosing at 90 - 110 mg at a time. Too much will flood the neuromuscular junction with acetylcholine and can lead to a cholinergic crisis. It's very similar to a myasthenic crisis, so patients might think they need even more when what they need is less. BUT talk to your neuro first before making changes!

Annie

Annie, if you have details of any such research I would be interested... I upped from 90 to 120, and now 180 in very short time. My Doctor had no idea, so just keeps writing the scripts.

Yes I know, I have a weekly plex and they take a bunch of BLOOD TEST every time to make sure everything is in line...I'm going to be cutting back on Pantoloc morning dose this coming week, also be cutting back on imuran, my RITUXAN seems to be kicking in very well...will keep you posted.

JJ, Go to PubMed and dig around. There should be info there about "Pyridostigmine Bromide overdose" or "cholinergic crisis." Please be careful because a cholinergic crisis can sneak up on you.

Snoel, A B12 test is not a routine test. You have to specifically ask for it. Without enough B12, the cells in a body will slowly die. Yup, every single cell. Been there and it's not fun. I now have permanent damage due to how long it went undiagnosed.

Annie

My question was if you DO NOT have MG, how much could a person take before they would have issues.

I have read about how it affected Gulf War soldiers and what their dosages were. However it was not regulated very well when it was given to them. Being a combat vet from that era I know how it goes with that sort of thing.

I was looking to see if there was any study or something that said what the limits are. Something for someone with seronegative MG to be able know that if your taking "X amount" you have it or you would be (fill in the blank).

Thanks for the prior responses from everyone.

It seems that you are having a positive effect from the drug. The drug is not, however, benign for those with or without MG/CMS/LEMS.

http://www.ncbi.nlm.nih.gov/pubmed/1757242

http://www.fda.gov/downloads/drugs/e.../ucm133154.pdf

http://www.medsafe.govt.nz/profs/dat...estinontab.pdf

http://neuromuscular.wustl.edu/mtime/mgrx.html

Have your doctors done enough testing to rule MG in or out?

Annie

off mestonon
 

My hubby was only prescribed Mestonon for about 6 months, and was told that it only really works to droopy eyelid. He was also started on cell-cept, and has been on that a year. His eyesight is great now, and has some generalized weakness,etc. He has been very lucky that he has not had to be hospitalized for crisis....hoping for the best.