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


advertisement
Reply
 
Thread Tools Display Modes
Old 11-02-2009, 11:20 AM #1
dog lover's Avatar
dog lover dog lover is offline
Member
 
Join Date: Aug 2009
Location: mo
Posts: 267
10 yr Member
dog lover dog lover is offline
Member
dog lover's Avatar
 
Join Date: Aug 2009
Location: mo
Posts: 267
10 yr Member
Default Mestinon making weakness worse???

Hi everyone,
I was wondering if anyone has experienced worsening weakness from Mestinon? I know if you take too much it will make symptoms worse but I only take 60mg 3 x a day. It seems to be worst after my first dose in the morning. It is a really odd feeling of weakness and feeling shaky but when I look at my hands you can't see it. I am also on 40 mg Pred every other day but I don't believe it is connected to that because like I said it seems to be at it's worst in the mornings. This morning I woke up feeling really good but after the Mestinon I am now feeling the shaky weakness. I am truly stumped but feel there has to be a connection.
Kendra
dog lover is offline   Reply With QuoteReply With Quote
Old 11-02-2009, 11:23 AM #2
Joanmarie63 Joanmarie63 is offline
Member
 
Join Date: Mar 2009
Location: Western North Carolina
Posts: 468
15 yr Member
Joanmarie63 Joanmarie63 is offline
Member
 
Join Date: Mar 2009
Location: Western North Carolina
Posts: 468
15 yr Member
Default

Ask your Dr, you may need to lower your dosage. Or it maybe evn have your pred lowered. Keep us updated
Joanmarie63 is offline   Reply With QuoteReply With Quote
Old 11-02-2009, 11:34 AM #3
jana's Avatar
jana jana is offline
Member
 
Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
jana jana is offline
Member
jana's Avatar
 
Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
Default

Kendra, I "think" that the Prednisone "might" be doing its job -- and you might not need as much Mestinon -- or maybe, not ANY Mestinon. But, this IS, definitely, as Joanmarie said, something that you should discuss with your doctor.

The whole point of taking Mestinon is to feel STRONGER -- not weaker. The "shaky weakness" does sound like "overdose".

BTW, if it were me, I'd prefer to lower that Pred. Using the lowest possible dose of Pred WITH Mestinon seems to be the course with the fewest long term "nasty" side effects. But, tapering off of Pred is a S-L-O-W process -- may take MONTHS or even YEARS -- and MUST be done under a doctor's supervision.
jana is offline   Reply With QuoteReply With Quote
Old 11-02-2009, 11:57 AM #4
dog lover's Avatar
dog lover dog lover is offline
Member
 
Join Date: Aug 2009
Location: mo
Posts: 267
10 yr Member
dog lover dog lover is offline
Member
dog lover's Avatar
 
Join Date: Aug 2009
Location: mo
Posts: 267
10 yr Member
Default Mestinon making weakness worse???

Joan Marie and Jana,
I think I will try only taking 30 mg of Mestinon this afternoon and see if that makes a difference. If it doesn't make a difference I will call my Dr. in the morning. The Pred is a double edged sword. It makes me feel so much better but I am terrified of the long term side effects. I don't think lowering my dose of that is an option right now. It was precribed by my Pulmo to see if it will help with Interstitial Lung Disease and she wants me on it 3-4 months. Jana I think you may be right that I may be overdosing on the Mestinon since I am now on the Pred too. This disease is so confusing and the Mestinon is so tricky because too little or too much makes MG worse.
Thanks,
Kendra
dog lover is offline   Reply With QuoteReply With Quote
Old 11-02-2009, 12:04 PM #5
Maxwell'sMom's Avatar
Maxwell'sMom Maxwell'sMom is offline
Member
 
Join Date: Oct 2006
Posts: 371
15 yr Member
Maxwell'sMom Maxwell'sMom is offline
Member
Maxwell'sMom's Avatar
 
Join Date: Oct 2006
Posts: 371
15 yr Member
Default

[SIZE="3"]Kendra, I was just going to start a thread about Mestinon. It does sound like you may not need it in the morning. I'd calll the doc and let them know.
here is a link that might be helpful.
[http://mestinon.com/
I've never had it cause me to get weaker, but I've started to have little eye muscles twitch, and have little spasm when I'm over due for it.
And then I take the mestinon, and it all calms down.
mestinon, does not help with my double vision, but it helps when I'm tired, and of course it makes a world of difference with my breathing.
Best of wishes
Love Lizzie /SIZE]
Maxwell'sMom is offline   Reply With QuoteReply With Quote
Old 11-02-2009, 12:16 PM #6
dog lover's Avatar
dog lover dog lover is offline
Member
 
Join Date: Aug 2009
Location: mo
Posts: 267
10 yr Member
dog lover dog lover is offline
Member
dog lover's Avatar
 
Join Date: Aug 2009
Location: mo
Posts: 267
10 yr Member
Default Mestinon making weakness worse???

Lizzie,
I will be looking for your thread on Mestinon! I will check out the link too. Thanks so much!!!
I also have the eye twitches. Kind of a wierd feeling but nothing that bothers me much. I'm so glad it helps with your breathing. There is nothing scarier to me than not being able to breath. Luckily I have never had that happen but it is definitely my biggest fear.
Kendra
dog lover is offline   Reply With QuoteReply With Quote
Reply


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
I swear the Avonex is making it worse. legzzalot Multiple Sclerosis 8 10-18-2009 07:41 PM
Therapy, might be making it worse billy027 Thoracic Outlet Syndrome 3 10-07-2009 02:29 AM
B12 defiency making RLS worse? magenta272 Vitamins, Nutrients, Herbs and Supplements 2 08-17-2009 07:22 PM
PT Making Things Worse? ali12 Reflex Sympathetic Dystrophy (RSD and CRPS) 14 01-01-2009 08:00 PM
Hot weather making me feel worse Melina Trigeminal Neuralgia 1 03-14-2008 09:58 AM


All times are GMT -5. The time now is 04:48 PM.

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.