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


advertisement
Reply
 
Thread Tools Display Modes
Old 10-19-2015, 04:17 PM #1
scrubbs scrubbs is offline
Member
 
Join Date: Nov 2009
Location: las vegas, nv
Posts: 181
10 yr Member
scrubbs scrubbs is offline
Member
 
Join Date: Nov 2009
Location: las vegas, nv
Posts: 181
10 yr Member
Default worsen

Has anybody ever have taking mestinon worsen their symptoms?
scrubbs is offline   Reply With QuoteReply With Quote

advertisement
Old 10-19-2015, 04:37 PM #2
scrubbs scrubbs is offline
Member
 
Join Date: Nov 2009
Location: las vegas, nv
Posts: 181
10 yr Member
scrubbs scrubbs is offline
Member
 
Join Date: Nov 2009
Location: las vegas, nv
Posts: 181
10 yr Member
Default 1 tablet worsen

I meant 1 tablet of mestinon worsening their symptoms? Like taking a tablet one day and feeling worse then waiting a day or two and taking another tablet?
scrubbs is offline   Reply With QuoteReply With Quote
Old 10-20-2015, 07:22 AM #3
juliejayne juliejayne is offline
Member
 
Join Date: Apr 2014
Location: Dordrecht, Netherlands
Posts: 225
8 yr Member
juliejayne juliejayne is offline
Member
 
Join Date: Apr 2014
Location: Dordrecht, Netherlands
Posts: 225
8 yr Member
Default

Taking 1 (60mg?) tablet of Mestinon will have an effect within 30 minutes, and it will be out of your body within 6 hours.

If one tablet is making you feel worse.... go back to your Doctor. 1 tablet should not be enough to be an overdose, but if it is making you worse then it is clearly not working for you.

That may mean that you don't have MG. Or it might mean that you need a different medication. See you doctor.
juliejayne is offline   Reply With QuoteReply With Quote
Old 10-20-2015, 11:05 AM #4
scrubbs scrubbs is offline
Member
 
Join Date: Nov 2009
Location: las vegas, nv
Posts: 181
10 yr Member
scrubbs scrubbs is offline
Member
 
Join Date: Nov 2009
Location: las vegas, nv
Posts: 181
10 yr Member
Default positive

Had my blood work done last month. I have not been taking mestinon for some time now. Blood work came back positive when I went to UCLA last month so was told to start taking it again.
See a new neurologist next week now that I am back home. Maybe he may have some answers but the fact is I took a single mestinon on 3 different days that promoted trouble chewing and other symptoms including some difficult breathing.
High probability that this has never happened with a person with a positive diagnosis.
scrubbs is offline   Reply With QuoteReply With Quote
Old 10-20-2015, 01:43 PM #5
ErinBear ErinBear is offline
Member
 
Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
ErinBear ErinBear is offline
Member
 
Join Date: Jul 2014
Location: California
Posts: 162
8 yr Member
Default

It might be that you need a different dose. My understanding is that having too much Mestinon can create problems, and a lower dose can work just fine. Perhaps a whole tablet is too high a dose in your case. When I started taking Mestinon, my doctor had me begin with 1/4 tablet. It might be worth asking your physician about trying a smaller dose to see if that would be effective. Then again, a different medication altogether might be better for you, too. I hope the doctor can give you some good advice when you see him/her.

Best wishes,
ErinBear
ErinBear is offline   Reply With QuoteReply With Quote
Old 10-20-2015, 04:01 PM #6
scrubbs scrubbs is offline
Member
 
Join Date: Nov 2009
Location: las vegas, nv
Posts: 181
10 yr Member
scrubbs scrubbs is offline
Member
 
Join Date: Nov 2009
Location: las vegas, nv
Posts: 181
10 yr Member
Default thanks

thanks, hope new neurologist will have some answers.
scrubbs is offline   Reply With QuoteReply With Quote
Old 10-21-2015, 04:21 AM #7
juliejayne juliejayne is offline
Member
 
Join Date: Apr 2014
Location: Dordrecht, Netherlands
Posts: 225
8 yr Member
juliejayne juliejayne is offline
Member
 
Join Date: Apr 2014
Location: Dordrecht, Netherlands
Posts: 225
8 yr Member
Default

So what symptoms do you have without meds, and do any of them improve with meds. If not then clearly something is not right. Maybe a different medication is needed.
juliejayne is offline   Reply With QuoteReply With Quote
Old 10-21-2015, 04:27 AM #8
juliejayne juliejayne is offline
Member
 
Join Date: Apr 2014
Location: Dordrecht, Netherlands
Posts: 225
8 yr Member
juliejayne juliejayne is offline
Member
 
Join Date: Apr 2014
Location: Dordrecht, Netherlands
Posts: 225
8 yr Member
Default

I see from earlier posts that you were on prednisone, IGIVs and Cellcept.

That being the case, I would be surprised if a single Mestinon tablet could make that much difference, BUT it could perhaps be an interaction with one of the other drugs.
juliejayne is offline   Reply With QuoteReply With Quote
Old 10-21-2015, 07:56 PM #9
scrubbs scrubbs is offline
Member
 
Join Date: Nov 2009
Location: las vegas, nv
Posts: 181
10 yr Member
scrubbs scrubbs is offline
Member
 
Join Date: Nov 2009
Location: las vegas, nv
Posts: 181
10 yr Member
Default started then stopped

I 2008 T tested positive for the AChR antibodies and treated accordingly.
After 2 1/2 years I was told I was stabilized because my symptoms were not as terrifying, (less severe and less frequent) and stated experiencing things that were not normal for one with MG.
1 example. I would feel pretty god in the morning and maybe run some chores. Instead of feeling less fatigued I felt even better later in the day. It's a long story how I ended up with this Neurologist but in mid 2013 my blood work came back seronegative and he slowed my treatment to 0. He refused to send me for a SFEMG fearing it could come back seropositive. I knew I was still inflictive and 3 other refused to send me for a SFEMG.
After an incident, I went to a Neurologist in Cal. that sent me to UCLA for a SFEMG but the blood work preceded me and I was positive again. That UCLA Dr. prescribed Cellcept and Mestinon with a referral to a Neurologist back home. The first Mestinon worsened my condition.
When I was being treated I was taking 5 60 mg. a day. Strange, but new Neurologist next week might have some answers. Thank you for your reply.
scrubbs is offline   Reply With QuoteReply With Quote
Old 10-23-2015, 03:55 AM #10
juliejayne juliejayne is offline
Member
 
Join Date: Apr 2014
Location: Dordrecht, Netherlands
Posts: 225
8 yr Member
juliejayne juliejayne is offline
Member
 
Join Date: Apr 2014
Location: Dordrecht, Netherlands
Posts: 225
8 yr Member
Default

Let me state, that I am not a doctor, and I can only make suggestions from extensive reading, of what other people have experienced.

That said, it does sound as though you MIGHT have one of the CMS variants or some other Myasthenic syndrome. It is certainly possible that you might have MG too.

Obviously if your root problem is partly or wholly not an auto-immune disease (CMS are genetic defects) then taking immuno suppressants could cause all sorts of new problems.

I hope that your new Neuro takes a serious look at all of your history and gets to the bottom of the problem. Fingers crossed.
juliejayne is offline   Reply With QuoteReply With Quote
Reply

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
Drug Goes From $13.50 per Tablet to $750. Overnight! DejaVu Medications & Treatments 16 10-30-2015 05:18 PM
Windows Tablet and Phone EnglishDave Computers and Technology 10 07-14-2015 04:49 PM
Someday I will get a tablet!! MelodyL Computers and Technology 3 12-29-2011 03:42 PM
HP tablet what do you know? Dejibo Computers and Technology 3 07-15-2011 08:56 AM
forgot to take tablet Melina Trigeminal Neuralgia 2 08-11-2008 06:48 AM


All times are GMT -5. The time now is 09:40 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.