Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.


advertisement
Reply
 
Thread Tools Display Modes
Old 02-28-2019, 07:08 PM #1
MGSpouse's Avatar
MGSpouse MGSpouse is offline
Junior Member
 
Join Date: Feb 2019
Location: Brooklyn, NY
Posts: 8
5 yr Member
MGSpouse MGSpouse is offline
Junior Member
MGSpouse's Avatar
 
Join Date: Feb 2019
Location: Brooklyn, NY
Posts: 8
5 yr Member
Confused Mestinon & Stomach Pain - Is There a Solution??

Hello to All!

New member here - I am grateful to find this forum. I have gotten a crash-course on Myasthenia Gravis due to my wife's recent diagnosis.

Her ocular symptoms began in late August of 2018, and upon finding an exceptional neurologist, he diagnosed her on-the-spot on her first visit in January of 2019. Blood tests confirmed what we already knew, with the presence of the offending antibodies. MG progressed to her jaws and neck, as well as general muscle fatigue and lack of energy as the day progresses.

Following a CT, she did not have Thymoma, though he did not rule out a Thymectomy at some point in the future.

After beginning her course of Mestinon, first 30mg 3x's per day for one week and then 60mg 3x's per day thereafter, she has been utterly bed-ridden with crippling stomach and intestinal cramps, with the requisite loose stool and frequent trips to the bathroom, though that doesn't provide her with any lasting relief, just more misery.

I know there are worse things with which to be stricken than Myasthenia, and we should be thankful. And I know that everyone's experience is different, from mild annoyance to life-altering.

What I'd like to know (and pardon my ignorance if this discussion has been exhausted elsewhere) is if others have had such a severe reaction to the Mestinon? And if so, is there any solution? Any relief?

It is completely devastating to watch her suffer so much and have no way to help her. Not to be sexist, but my only experience is through the eyes of a male, and to feel helpless, particularly in the face of a woman who is in very acute physical pain - in this case the woman I love and to whom I devote myself - well it is a very specific dimension of hell that I cannot endure without taking some kind of action.

That is why I am here. I am attempting to alleviate the suffering of the person I care about most in the world, and right now I feel totally inept. So I am asking the community, those of you who have already traveled down this road, for guidance, wisdom and help.

I know from research that most who have suffered from such severe stomach/intestinal pain were relatively pain-free after six months. She has only been on Mestinon for 3 - 4 weeks. She has also had bouts of IBS in the past five years or so, and I believe that is a factor in her body's intolerance for the Mestinon. But there must be SOMETHING out there to help her?

I am eternally grateful for anyone who takes the time to read my plea and offer support and suggestions. I have heard of two medications that may be relevant, so if someone has used either of these, I would welcome your own experiences.

They are: Glycopyrrolate and Hyoscyamine.

Do either of these help? And if so, do they help a little? Or a lot? Her pain seems most acute in the evening, after her third dose, though it follows her throughout the day. She does try to eat at least a little something, but as you can imagine, it is difficult to eat while suffering, and it often seems to only lead to more brutal trips to the bathroom. So kind of a damned if you do, damned if you don't situation.

Again, many thanks in advance for any and all support and guidance. I look forward to meeting all of you within this community. It appears that this is now a part of my life and will remain so. At least we can make the journey together.

Regards to all,
Daniel
MGSpouse is offline   Reply With QuoteReply With Quote

advertisement
Old 03-02-2019, 07:07 PM #2
winic1 winic1 is offline
Member
 
Join Date: Feb 2011
Posts: 295
10 yr Member
winic1 winic1 is offline
Member
 
Join Date: Feb 2011
Posts: 295
10 yr Member
Default

I got stomach pain, and still do, if I don't eat with the mestinon. And I don't mean a couple of crackers, I have to EAT something substantial. It's a nuisance, I don't always want to eat when it's time for a pill, but I suffer if I don't. I eat first, then swallow the pill, or swallow then immediately eat a bunch. Worst case is to take the pill, then wait 20 minutes or so, then eat, that seems to be just deadly.

The other thing I discovered is a bit more obscure. I have lactose intolerance. Generally, I can cheat a bit if I eat the dairy-whatever with other food. Wanna take a guess what one of the fillers that they make the mestinon pills with is? Lactose!!! Now, a pill is not all that big, but it's not like eating a pill-sized piece of cheese, it's a little packet of lactose, and on an empty stomach it makes a wicked little bubble of gas in my guts that just hurts! I found that by eating a lact-aid or dairy-ease pill before swallowing the mestinon pill, I didn't get the gut cramps. Found I could get away with as little as 1/4 of the dairy ease tablet brand we get most of the time. You mention she has had IBS at times in the past, if it is at all lactose-related, this might just be a trick that could help. I don't know why they put lactose in their pills, knowing that it can be a problem for people, makes no sense to me. But for me, it then makes sense why I have to either eat a significant amount first, so the lactose in the pill is buffered by the other food, or do the lact-aid pill to handle it.
winic1 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
MGSpouse (03-04-2019)
Old 03-04-2019, 03:43 PM #3
kiwi33's Avatar
kiwi33 kiwi33 is offline
Grand Magnate
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
kiwi33 kiwi33 is offline
Grand Magnate
kiwi33's Avatar
 
Join Date: Jan 2015
Location: Sydney, Australia.
Posts: 3,093
8 yr Member
Default

Daniel, what you have described about what your wife has experienced is a known side-effect of Mestinon.

It might be worth encouraging her to discuss this with her doctors.

Mestinon Side Effects in Detail - Drugs.com
__________________
Knowledge is power.
kiwi33 is offline   Reply With QuoteReply With Quote
Old 03-04-2019, 08:24 PM #4
MGSpouse's Avatar
MGSpouse MGSpouse is offline
Junior Member
 
Join Date: Feb 2019
Location: Brooklyn, NY
Posts: 8
5 yr Member
MGSpouse MGSpouse is offline
Junior Member
MGSpouse's Avatar
 
Join Date: Feb 2019
Location: Brooklyn, NY
Posts: 8
5 yr Member
Default

Quote:
Originally Posted by winic1 View Post
I got stomach pain, and still do, if I don't eat with the mestinon. And I don't mean a couple of crackers, I have to EAT something substantial. It's a nuisance, I don't always want to eat when it's time for a pill, but I suffer if I don't. I eat first, then swallow the pill, or swallow then immediately eat a bunch. Worst case is to take the pill, then wait 20 minutes or so, then eat, that seems to be just deadly.

The other thing I discovered is a bit more obscure. I have lactose intolerance. Generally, I can cheat a bit if I eat the dairy-whatever with other food. Wanna take a guess what one of the fillers that they make the mestinon pills with is? Lactose!!! Now, a pill is not all that big, but it's not like eating a pill-sized piece of cheese, it's a little packet of lactose, and on an empty stomach it makes a wicked little bubble of gas in my guts that just hurts! I found that by eating a lact-aid or dairy-ease pill before swallowing the mestinon pill, I didn't get the gut cramps. Found I could get away with as little as 1/4 of the dairy ease tablet brand we get most of the time. You mention she has had IBS at times in the past, if it is at all lactose-related, this might just be a trick that could help. I don't know why they put lactose in their pills, knowing that it can be a problem for people, makes no sense to me. But for me, it then makes sense why I have to either eat a significant amount first, so the lactose in the pill is buffered by the other food, or do the lact-aid pill to handle it.
Winic - Thank you soooo much for this info. When my wife was first presenting with symptoms of IBS, I was almost certain that she was developing Lactose Intolerance, as many women do post-menopause, particularly as she doesn't eat dairy on a regular basis.

Funny, I remember when I was a kid, my mother would eat cereal with an inch or less of milk in the bowel. It seems that many women just don't have a taste for many types of dairy or may even have an aversion to it, which must be some kind of cruel joke considering that women need more dairy than men.

The day after my above post, I finally convinced my wife to go back to the 1/2 tab 3x's per day that her doctor started her on and that has made a HUGE difference. But at some point she is going to have to go back to a full 60mg tab, or possibly even more to adequately address her vision and her muscle weakness, so I am DEFINITELY going to pick up some Lactaid or Dairy-Eze as the concentrated lactose could very likely be the culprit.

Excessive gas is definitely a byproduct of the Mestinon in her case, whether it's a loud rumbling in her digestive tract, painful pockets of gas in her gut, a hard knot in her chest as well as the most obvious type of gas. So you really may be on to something with the lactose, and I cannot Thank You enough for this valuable info. This is why I turned to a user forum such as this, as people have real experience that might take doctors months or longer to figure out, if they do at all.

When she goes back to a full pill, hopefully her body will also be more acclimated to the medicine, which could also help. And I know that eating before hand is always sound advice, but sometimes this poor woman simply could not eat due to so much digestive misery. You have really given me some incredible insight.

[QUOTE=kiwi33;1273082]Daniel, what you have described about what your wife has experienced is a known side-effect of Mestinon.

It might be worth encouraging her to discuss this with her doctors.

Mestinon Side Effects in Detail - **/QUOTE]

Kiwi, Thank You for your post. I/we are in continuous contact with her PCP and Neurologist, though some days they are on rounds and not at their private practice.

Also, although stomach pain and intestinal cramps are common side-effects of Mestinon, it is worth noting for anyone who finds themselves being prescribed Mestinon, the SEVERE stomach pain and SEVERE intestinal pain/cramps from which she has been suffering are NOT common side-effects and should be addressed IMMEDIATELY by a physician:

**

One of the possible causes for these kinds of severe reactions can be due to over-dosage, which is why I urged my wife to go back to 30mg 3x's/day, which was prescribed to her for only 1 week. It might be that - at least for her - going up to 60mg 3x's after one week was just too much too fast.

If anyone else has some theories, I again welcome whatever info you might have to share.

Thanks again to winic and kiwi for the care and consideration in reading and responding to my post. As always, I am humble and grateful.

Daniel
MGSpouse is offline   Reply With QuoteReply With Quote
Old 03-05-2019, 11:13 AM #5
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Smile

Hi, Daniel. I'm pretty busy right now, but wanted to pop in to say something about the Mestinon tablets. They contain dairy. So if your wife has an issue with dairy/lactose, tablets might not work for her.

I use Mestinon Syrup, which has no dairy. There's also Mestinon Timespan. She may want to discuss those options (and costs) with her neurologist.

I'll come back when I have more time. I hope your wife is doing well.

Annie
AnnieB3 is offline   Reply With QuoteReply With Quote
Old 03-05-2019, 06:32 PM #6
winic1 winic1 is offline
Member
 
Join Date: Feb 2011
Posts: 295
10 yr Member
winic1 winic1 is offline
Member
 
Join Date: Feb 2011
Posts: 295
10 yr Member
Default

Hoping it's something as simple as the lactose, for her. At least it's an easy and pretty much harmless thing to try solving. Still don't know why they would choose to put lactose into the pill formulation. Seriously, what is wrong with those people?
winic1 is offline   Reply With QuoteReply With Quote
Old 03-18-2019, 10:32 PM #7
MGSpouse's Avatar
MGSpouse MGSpouse is offline
Junior Member
 
Join Date: Feb 2019
Location: Brooklyn, NY
Posts: 8
5 yr Member
MGSpouse MGSpouse is offline
Junior Member
MGSpouse's Avatar
 
Join Date: Feb 2019
Location: Brooklyn, NY
Posts: 8
5 yr Member
Default

Quote:
Originally Posted by AnnieB3 View Post
Hi, Daniel. I'm pretty busy right now, but wanted to pop in to say something about the Mestinon tablets. They contain dairy. So if your wife has an issue with dairy/lactose, tablets might not work for her.

I use Mestinon Syrup, which has no dairy. There's also Mestinon Timespan. She may want to discuss those options (and costs) with her neurologist.

I'll come back when I have more time. I hope your wife is doing well.

Annie
Hi Annie,

Thanks for taking the time to pass along this valuable information. As so many adults (esp. post-menopausal women) have issues with Lactose, it almost seems like some sort of subterfuge using it as a filler in this way.

As Winnic1 brought to my attention, the Lactose filler may be a contributing factor. I haven't been on in a number of days as things have been very hectic, but I did bring it up with her doctor.

In the meantime, I got my wife to go back to a half pill (30mg) which helped her in the short-term. We conferred with her neurologist and now she is back to a full tablet with an added prescription for Hyoscyamine Sulfate, which is a common med for IBS.

Unfortunately, she just filled her script for Mestinon, so we'll have to wait a month before she can try the syrup, but I believe that is the way to go. Why have the added potential for Lactose problems if they can be avoided altogether? She is not a candidate for the time-release because she cannot swallow pills and needs to crush her pills.

We'll see how she does with the added med. - so far since going back to a full 60mg she has experienced less distress, but it seems to be bothering her a little more each day. I think the real test will be when we can get her on the syrup and hopefully not even require a supplemental medication.

Will keep everyone posted as to how it works out.

Many thanks,
Daniel
MGSpouse is offline   Reply With QuoteReply With Quote
Reply

Tags
mestinon, myasthenia, pain, solution, stomach

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Mestinon stomach pain did you get used to it? Tony292 Myasthenia Gravis 6 03-01-2015 05:45 PM
mestinon on an empty stomach wing Myasthenia Gravis 5 01-18-2013 09:22 AM
How do I take my Mestinon on an empty stomach? peteypoo Myasthenia Gravis 9 08-28-2010 03:51 PM
messing with the Mestinon (empty stomach?) Stellatum Myasthenia Gravis 4 03-09-2010 09:10 AM


All times are GMT -5. The time now is 06:08 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.