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


advertisement
Reply
 
Thread Tools Display Modes
Old 10-16-2012, 09:06 AM #11
StephC StephC is offline
Member
 
Join Date: Jul 2012
Location: Fort Lauderdale, FL
Posts: 286
10 yr Member
StephC StephC is offline
Member
 
Join Date: Jul 2012
Location: Fort Lauderdale, FL
Posts: 286
10 yr Member
Default

Isnt it better to take more mestinon than more prednisone?
StephC is offline   Reply With QuoteReply With Quote

advertisement
Old 10-16-2012, 10:02 AM #12
southblues's Avatar
southblues southblues is offline
Member
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
southblues southblues is offline
Member
southblues's Avatar
 
Join Date: Jul 2012
Location: Georgia USA
Posts: 818
10 yr Member
Default

Quote:
Originally Posted by StephC View Post
Isnt it better to take more mestinon than more prednisone?
To a point, I would think that this is true. There are limits to what the body will tolerate of both.
__________________
Celeste
southblues is offline   Reply With QuoteReply With Quote
Old 10-16-2012, 10:37 AM #13
alice md's Avatar
alice md alice md is offline
Member
 
Join Date: Sep 2009
Posts: 884
10 yr Member
alice md alice md is offline
Member
alice md's Avatar
 
Join Date: Sep 2009
Posts: 884
10 yr Member
Default

Quote:
Originally Posted by StephC View Post
Isnt it better to take more mestinon than more prednisone?
That is a very good question.

Basically, the answer is yes. If you can get along with mestinon alone it probably the best as it has a very good safety profile and to the best of my knowledge very rare if any long term side-effects.

But, the other side of the coin is that mestinon has no effect on the illness itself. It's like taking tylenol for a headache.

Steroids can lead to remission in some patients. But, you need to reach a dose which leads to full control of the illness. So, increasing the dose of mestinon while you are increasing the steroid dose can be confusing. (and this illness is confusing enough any how).

In fact one of the people on this forum (don't remember who and when) mentioned that his neurologist didn't want him to take any mestinon, just steroids. And there is some sense in that.

Some people end up taking only symptomatic treatment either because they had no response or had serious side effects with immunsupresive treatment.

I personally think that when you have a disease which alters your life, it makes sense to try and treat it with reasonable treatments before deciding to come to terms with it and use only symptomatic treatment.

It sounds like you are having some response with a relatively low dose of prednisone, so it would make sense to gradually increase it until the max. effect is reached and then start tapering it down with or without another medication such as imuran.

There are patients who are stable for many years on a very low dose of medications.
alice md is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
StephC (10-16-2012)
Old 10-16-2012, 10:44 AM #14
alice md's Avatar
alice md alice md is offline
Member
 
Join Date: Sep 2009
Posts: 884
10 yr Member
alice md alice md is offline
Member
alice md's Avatar
 
Join Date: Sep 2009
Posts: 884
10 yr Member
Default

Quote:
I thought it was an acetylcholinesterase inhibitor. Someone said that it acted on acetylcholine receptors. Does it do both?
No, it doesn't work directly on the AchR. It slows down the breakdown of acetyl-choline, thus leading to more acetyl-choline in the synapse which in turn activates the AchR.

Quote:
The problem with digestive stuff as I understand it is that it just allows more acetylcholine regardless of the type of receptors. We want to target nicotinic receptors but since it is just slowing the breakdown of acetylcholine, the muscarinic receptors also get bombarded; thus the digestive dysfunction.
That's pretty much what it does.
alice md is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
southblues (10-16-2012)
Old 10-16-2012, 11:09 AM #15
StephC StephC is offline
Member
 
Join Date: Jul 2012
Location: Fort Lauderdale, FL
Posts: 286
10 yr Member
StephC StephC is offline
Member
 
Join Date: Jul 2012
Location: Fort Lauderdale, FL
Posts: 286
10 yr Member
Default

I suspect that like many others with MG I have additional health issues (I know Hashimotos) none of which are as disabling as MG but many of which seem to be helped from the med's (mostly since started prednisone). For ex - for past couple years my menstrual cycle has been brutal, very heavy and very painful - last month after 3 weeks of prednisone was totally normal. Another ex off the top of my head is I have had chronic constipation since GBS in 1984 now almost normal.
StephC is offline   Reply With QuoteReply With Quote
Old 10-16-2012, 11:14 AM #16
rogerm213's Avatar
rogerm213 rogerm213 is offline
Junior Member
 
Join Date: Oct 2012
Location: Maine
Posts: 45
10 yr Member
rogerm213 rogerm213 is offline
Junior Member
rogerm213's Avatar
 
Join Date: Oct 2012
Location: Maine
Posts: 45
10 yr Member
Default

Quote:
Originally Posted by alice md View Post
In fact one of the people on this forum (don't remember who and when) mentioned that his neurologist didn't want him to take any mestinon, just steroids. And there is some sense in that.

That was me Alice he wanted to wait and see how I would react to the plasmapheresis and the prednisone and wait on the mestinon. He feared the mestinon would mask what the other treatments were doing and wanted me to tough it out for a month before trying it.
rogerm213 is offline   Reply With QuoteReply With Quote
Old 10-16-2012, 11:19 AM #17
StephC StephC is offline
Member
 
Join Date: Jul 2012
Location: Fort Lauderdale, FL
Posts: 286
10 yr Member
StephC StephC is offline
Member
 
Join Date: Jul 2012
Location: Fort Lauderdale, FL
Posts: 286
10 yr Member
Default

Roger,

That is interesting approach but for me that would not be option for me as every day without relief is causing extreme financial hardship. Waiting any longer for relief would certainly cause me to lose my law practice/all income/support.

So clearly it is important that we all remember that not only is MG different for everyone, everyone has different circumstances that come into play when deciding how to proceed with treatment.
StephC is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
southblues (10-16-2012)
Old 10-16-2012, 11:56 AM #18
rogerm213's Avatar
rogerm213 rogerm213 is offline
Junior Member
 
Join Date: Oct 2012
Location: Maine
Posts: 45
10 yr Member
rogerm213 rogerm213 is offline
Junior Member
rogerm213's Avatar
 
Join Date: Oct 2012
Location: Maine
Posts: 45
10 yr Member
Default

Steph, I really am so frustrated right now I would love to try mestinon. I admire all the courage I see in so many of you that have suffered so long. I am just about 5 weeks since my first noticable sypmtoms and 3 weeks from diagnosis. I see so many people not able to find a Doctor to diagnos them. In some ways I was lucky I had all the classic signs and found the right Dr so quickly. He ordered the right tests and even took videos as a teaching aid during my examination.

I may cave before my November appointment and ask to try the mestinon but I am trying to do it his way for now.
rogerm213 is offline   Reply With QuoteReply With Quote
Old 10-16-2012, 12:02 PM #19
alice md's Avatar
alice md alice md is offline
Member
 
Join Date: Sep 2009
Posts: 884
10 yr Member
alice md alice md is offline
Member
alice md's Avatar
 
Join Date: Sep 2009
Posts: 884
10 yr Member
Default

Quote:
So clearly it is important that we all remember that not only is MG different for everyone, everyone has different circumstances that come into play when deciding how to proceed with treatment.
That is true, but only to some extent. Because this illness doesn't give a ****about your life circumstances. In fact, if at all, it really enjoys destroying all your plans.

I think there is something very true in my neurologist's philosophy that this illness requires that you be patient enough with it's tough healing process and trying to find shortcuts can only make it much harder and longer.

I think this is also what Annie was trying to warn you about.

You seem to be on the right track, so just stay there and move slowly until you reach your destiny.
alice md is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
StephC (10-16-2012)
Old 10-16-2012, 12:04 PM #20
StephC StephC is offline
Member
 
Join Date: Jul 2012
Location: Fort Lauderdale, FL
Posts: 286
10 yr Member
StephC StephC is offline
Member
 
Join Date: Jul 2012
Location: Fort Lauderdale, FL
Posts: 286
10 yr Member
Default

Roger fyi i had symptoms for years (had been told in my head though) and over the last year had really deteriorated to point of not being able to function, support myself.
StephC 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
Feeling Good catra121 Reflex Sympathetic Dystrophy (RSD and CRPS) 11 03-10-2010 02:30 PM
I'm feeling good about... MooseasaurusRex Social Chat 282 03-08-2009 10:40 AM
Feeling good Doro Peripheral Neuropathy 6 01-15-2008 10:35 PM


All times are GMT -5. The time now is 09:17 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.