Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
For those of you on it, how long did it take for it to kick in for you. I am on my 11th week now waiting for it to kick in so I can lower the prednisone. I was on cellcept many years ago and it worked very well for me, I just can't remember how long it took to kick in. Thanks!
Curt
Terry
I am really happy with cellcept. I have had no problems.I was in hospital with a breathing crisis in March. I did plasmapherisis and then started predisone (60) in April. I started cellcept in May. I started predisone reduction in July.
Before Christmas(7 months after starting cellcept and 1 year since thymus removal) I would say I was as close to perfect as I would need. Christmas has wore me out but I am going to be strong in a couple days. I attribute the success to plasmapherisis, prednisone, cellcept and our friend mestinon.I hope you do well soon.
Hugs, Cathy
I have been off of pred for I think 4 years now. It took a year to wean off of it but I finally did. Cellcept is the only drug I take for MG, haven't taken mestinon more than 4 or 5 times in the last 3 years.
Terry
Let me start off by saying that you need to "believe" that it will help you. I feel this is important.
It took me approx 9 weeks to show signs? That is, I started my cellcept one week before my five sittings of IVIG, it seemed to sustain the benefits from it and I have been progressing since.
You are 11 weeks in, and while that is enough time to see results, it is a bit on the "early" side of things. We had someone bring up a discussion recently and I posted:
"The mean time to patient reported improvement was 8.8 weeks with a maximal improvement seen at 26.7 weeks."
It seems to be a misquote in that we should see some results after this time, but not for maximum improvement. My neuro said we would give it a year based on her knowledge, Based on what this says, people should only give it six months to work and someone like myself should not expect to get any better than I am? I have seen better results after six months, no doubt. Also, there are plenty of other reports that mention people having benefits up to 2 yrs later. I remember someone mentioning they had nothing for over a year, and then at a year and a half, BOOM....they had significant results.
I wonder if the things I do in addition to my cellcept are helping me also. Things like my organic multivitamin w herbs, and my 8 source protein powder. I will be coming at a crossroads at some point if I cannot achieve a remission me thinks. Not sure what I will do next, if anything, but I have been thinking about it and next Christmas would make it two years on cellcept for me. Before I got this nasty cold I have, last week, I was able to almost run full speed in the park with my 11 yr old, so I feel I have been heading in the right direction. It is the sustainment that I have to work on.
Hang in there!
Hope that helps.
TJ
I went back and read the article again. At the very end of it, it mentions:
"the retrospective study of 85 patients reported a maximal objective benefit only at an average of 26.7 weeks (Meriggioli et al 2003). It is possible that a separation in efficacy would have been demonstrated had the trial been carried out for a longer period of time."
"Likewise, there are similar limitations in the 2008 Sanders et al MMF clinical trial. As pointed out in their paper, it is possible that the results of their study were tempered by an overly rigorous definition of treatment response, a study period that was perhaps too short (36 weeks)"
"Much work remains to determine MMFs true place in MG management. Despite recent studies, questions still exist regarding MMFs long-term efficacy, optimal dose, optimal population of use, optimal length of use, benefit as a combination therapy, and long-term safety profile. These specific questions should be addressed via future prospective placebo-controlled studies."
As it relates for me(89% efficacy of the minority tested):
"MMF was not studied in isolation, but rather as an add-on therapy to prednisone. Further studies on the efficacy of MMF as a monotherapy (against placebo) or as an add-on therapy to other non-steroid immunosuppressive therapies should be performed to address this hypothesis"
They had results from only a few people as it related to monotherapy
Hang in there..