First Day on Mestinon

[Tinker]

Took 1/2 pill at 12 and 1/2 at 5.  Had stomach cramps and diarrhea by 3:30 pm but did ok after the second dose.  Got a little sweaty and anxious, and now I'm dealing with insomnia as you can see. 

Maybe I need a smaller dose but I'll stick with this one for a while.  The good thing about this is it's fairly cheap at $22.50 / mo. Don't feel a bound of energy yet.  Still in bed at 2 or 3 pm as usual.

[kathylee]

Hi Tinker, Hows the mestinon going? I have been searching for info on Sjogrens and mestinon use. Yours is only the second place I have seen this. Mestinon makes all my dry symptoms vastly better! It is the only thing that helps me move phlegm in a normal way out of lungs. I barely think of the need for my Systane when on 60mg 4 times a day.

Now it sure helps my strength but I have been give diagnosis around Myasthenia Gravis-neuromuscular disease. My big question is who prescibed it to you? Obviously this rare. My neuro seems to discount that mestinon works so well and that means I have Myasthenia Gravis. Mayo neuro seems to feel the same. It seems to be not considered as dangerous and singular to one purpose anymore.

emily-k

[Tinker]

Hi Emily,
I didn't do so well on the mestinon.  My belly hurt all the time and had to have a rest room handy in the beginning.  But the problem was it didn't help with my fatigue.  I know that I passed the docs neurological test after I took 1/2 tab, then she checked my muscle strength and it was vastly improved.

I thought I had found the answer that day, but they took me off of it due to the belly pain and no improvement in fatigue.   I got approved for IVIG and just had the first infusion today.  Doing ok except for headache.

My neurologist prescribed mestinon. Are you saying your doc won't give you mestinon anymore?

[kathylee]

Tinker, my tolerance has changed for it. I dont know why but I suspect it may have something to do with the complex issues around my vitamin D struggle that continues. My nervous system, my body are very different when my vit D is in the 50s or above. When I was put on mestinon my vit D was in the 70s or 80s. My parathyroid is obviously involved now which it shouldnt be. when D is very very low it can cause secondary hyperparathyroidism. I did have that. Look it up and see all the symptoms alot of which I had. My health changed so dramatically when D first went up alot I thoguth I was cured....other than my sicca. I was alot stronger.

Now tho my levels have been up into the 30s and 40s my parthyroid is still elevated and it shouldnt be. for reasons I dont get the Endo doesnt take this very seriously and got real pissy when I tried to talk about how I was tolerating mestinon fine when levels were first up. This is the current reason I cant take 60mg 4 times a day or I sure would. Even 15mg 4 times a day would keep me awake all nite literally now. Parathyroid really messes with sleep. Maybe D too. All I know is when my levels of these hormones are well into normal I sleep like a baby and can take mestinon. Now I cant get my levels up and the parathyroid wont do down and my endo wont address it. I wanted vit D shots but she said they dont make them anymore.

Also in winter 08 I got a bad batch of generic mestinon. There was no other my pharm could get so I had to wait till mestinon was approved by my insurance which meant being nearly off it. At same time it was winter and a cold one and my muscles like winter so I was doing better so I let go if being as good and just tried to enjoy less of a struggle.  emily K

[Tinker]

It's all so complicated!  Wiish I knew what to advise you, but I'm at a loss.

Bad batch of mestinon?  Maybe I got some....thought I got a generic...is it the same?  Good luck getting some relief.  I feel for you.  Take care.  Sheila

[kathylee]

There is a generic that is listed as Global that is actually made  by another company in China. And we all know what issues China has recently.

About your tummy. I read that the tummy issue is due to it making the body produce alot more acid. My doc was gonna prescribe this drug called Questran that reverses that. Maybe this would be an answer for you. Or just a good antacid?

Emily K

[Tinker]

I'm already on  prilosec 20 mg (2/day)

My mestinon said pryridostigmine or something close to that.

I did some research on my tummytroubles.  My waist is huge and I have gained 15 lbs. in a couple of months.  I look 7 mos pregnant....just miserable.

Anyhow, I thought about all those strong antibiotics I took over the last few mos. for cellulitis.  I bought some acidophillus to add back the good bacteria. Maybe that's the answer.  Sure hope so.  My son's wedding is in 2 mos and with a 37 inch waist, I can't wear anything but maternity clothes.  Now, that would raise a fe eyebrows, huh?

[irish]

Tinker, I started the mestinon and took the whole pill. I did not tolerate that well at all. I am on an inhaler that increases the bad symptoms of mestinon. I finally did the 1/2 tab at a time and did much better. I do't have a large improvement. I have just learned to take 1/2 tab prior to doing any heavier physical labor and it seems to prevent me from getting so weak.

You just have to work with the dosage and the side effects do seem to taper off. I have never had bad diarrhea, but have had nausea and just learn to eat something with it. My neuro wants me to take 1/2 tab morning and night as she said having it "on board" gives me a little leeway so if I do some physical activity I am pre-drugged--sort of a preventive maintenance.

I can get a gut ache if I take it on an empty stomach. It just feels like no food makes the med just sit there and chew away on your stomach. Makes a person get sort of disgusted doesn't it??? Irish