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


advertisement
Reply
 
Thread Tools Display Modes
Old 09-18-2013, 04:41 PM #1
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
Default low-dose Prednisone trial

I'm just checking in, and sharing my experience. I had a great summer, but started having symptoms again in mid-August. My neuro and I decided to try me on a low dose of Prednisone (10 to 20 mg.) with a view to treating flare-ups (not as a constant, on-going treatment). Because that's how my disease seems to come: periods of strength followed by flares.

This is day two for me. I'm not bothered by side-effects, but I'm also not stronger. In fact, I'm weaker. I know it's possible that even on such a low dose, I'll get worse before I get better, so I'm not quitting yet.

If this low dose doesn't help, or only helps a little bit, I can consider a higher dose, but that's a whole other decision that I'm not making yet. These flare-ups make me tired, and I have trouble walking, and weakness in my arms, but I am still not having troubles with my vision or breathing.

Abby
Stellatum is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
4-eyes (09-18-2013)

advertisement
Old 09-22-2013, 05:20 PM #2
Ron B. Ron B. is offline
Junior Member
 
Join Date: Sep 2013
Location: Olive Branch, MS.
Posts: 14
10 yr Member
Ron B. Ron B. is offline
Junior Member
 
Join Date: Sep 2013
Location: Olive Branch, MS.
Posts: 14
10 yr Member
Default

My neurologist has me on a steady 10mg every other day of prednisone. Then when I have flare ups he will try to have me do 10mg every day. Again it seeme to help after a bit of time but with my diabetes I have to be carefull as well. The steroid drives my sugar up so I need to be sure to make adjustments. I have also recently started Celcept in hopes to eliminate the steroids.We just have to keep on keeping on....
Ron B. is offline   Reply With QuoteReply With Quote
Old 09-26-2013, 08:30 PM #3
davew41 davew41 is offline
Junior Member
 
Join Date: Sep 2013
Posts: 63
10 yr Member
davew41 davew41 is offline
Junior Member
 
Join Date: Sep 2013
Posts: 63
10 yr Member
Default

I was on 30 a day then 40 then 50 then finally 60 I was able to swallow better and able to eat and get my weight back to where i was before lambert eaton set in..

Then out of the blue done, it just stopped working, I was and still do actually get weaker from it as it is a common effect and side effect of the wonderful prednisone.

I am now "tapering off" of it I take 30 every other day for a week then I will do a week of 25 every other day etc etc lowering 5 per week.


They want me to start cellcept i have it here tonight (the liquid) and after reading all the stuff about it i am not sure i will take it at all..

I also get IVIG 2 times a week every other week ang get maybe 1/2 of a day where i can walk up the steps without ripping myself up by the banister..

the only other options i am left with are cellcept or Rituxan NEITHER ARE OF ANY GOOD..
I just want to be able to walk again eat right again and breathe properly again..... seems like to much to ask..
davew41 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
High Dose Prednisone and blood sugar spike bigmatlem Multiple Sclerosis 4 07-22-2010 04:11 PM
Six-Month Efficacy Results With Low Dose of ProSavin in Phase I/II Trial Stitcher Parkinson's Disease 1 11-21-2008 11:08 AM
A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis. lady_express_44 Multiple Sclerosis 3 09-26-2008 11:51 AM
Double dose Copaxone more effective than single dose xo++ Multiple Sclerosis 6 10-01-2006 03:25 AM


All times are GMT -5. The time now is 09:23 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.