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-   -   Started Prednisone ...no help (https://www.neurotalk.org/myasthenia-gravis/181081-started-prednisone-help.html)

Rowejack 12-15-2012 12:59 PM

Started Prednisone ...no help
 
Was diagnosed with MG about 3 years ago ...Was fortunate to get diagnosis within one week !!
Mestinon (60mg/ 4 times a day ) worked quite well for three years . About 6 weeks ago , I started to have extreme fatigue problems ...soo tired walking out to mailbox .
Went to neuro and he started me on prednisone ..( 20mg first week , up to 40 mg second week ) Neuro told me it should start working in about two weeks So far no improvement ..at all . In fact , I'm about 30-40% worse . In past two days , I've fallen twice . Its like my legs below the knees just disappear .
Wondering what others experience is with the time it takes prednisone to work ..?
I'm going back to neuro in a week and wonder what he'll do ...increase dosage , put me on cellcept also ..?
Wife is getting ready for our Christmas party here tonight , and I'm just sitting there watching her work . Its so disappointing ..
Would appreciate any thoughts or similar experiences ..

4-eyes 12-15-2012 01:08 PM

First, I am sorry you are feeling so bad, especially when you have lots better things to do! It is very hard to sit on the sidelines. :(

The pred may take a bit longer to work. I am assuming you are still on the 40 mg? It is not unusual to have initial weakening before the improvement, so hopefully that is what you are experiencing, and you should soon improve.

If you continue to weaken, of course speak to your doctor. If you have any breathing, severe swallowing (can't manage saliva) or inability to walk without a lot of assistance, go ahead and head to ER. In the meantime--BE CAREFUL!

Hope you can get some rest before the party. I will be thinking of you--been there, done that!:(

denik258 12-16-2012 11:08 PM

Quote:

Originally Posted by Rowejack (Post 939736)
Was diagnosed with MG about 3 years ago ...Was fortunate to get diagnosis within one week !!
Mestinon (60mg/ 4 times a day ) worked quite well for three years . About 6 weeks ago , I started to have extreme fatigue problems ...soo tired walking out to mailbox .
Went to neuro and he started me on prednisone ..( 20mg first week , up to 40 mg second week ) Neuro told me it should start working in about two weeks So far no improvement ..at all . In fact , I'm about 30-40% worse . In past two days , I've fallen twice . Its like my legs below the knees just disappear .
Wondering what others experience is with the time it takes prednisone to work ..?
I'm going back to neuro in a week and wonder what he'll do ...increase dosage , put me on cellcept also ..?
Wife is getting ready for our Christmas party here tonight , and I'm just sitting there watching her work . Its so disappointing ..
Would appreciate any thoughts or similar experiences ..

Sounds a little like me. I had a thymoma and was dx with MG almost 8 years ago. Did well on mestinon for around 7 years. Started getting worse a year ago and was finally put on Pred in October. The same thing ,I was so tired I was going to quit work and had worsening of weakness but it was the fatigue that was so overwhelming. I actually noticed relief in the fatigue within the first week but it took almost a month to affect my muscle weakness. I am on 15mg a day. iI know with some they get weaker first and them improve. Hope it is just a time thing and it will work for you soon.

neutro 12-17-2012 08:26 AM

I started Pred as an in-patient with only 5 mg/day. My condition worsened during 10 days and after that, Pred was increased 5 mg every two days and I was home after about 4 weeks and with a Pred dosage of 50 mr/day.
Maurice.


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