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...
Maybe it is the prednisone. I have been on Cellcept 1000 in the morning and 1000 in the evening. With no problem.
It's lonely - don't know what to expect. The neuros don't seem to "know" hard answers (definitive answers) when I have questions about changes in my body. (* sigh *)
I hope there are a few more opinions before this thread dies.
Thanks again.
I started prednisone 25mg in dec 2011 and Cellcept 2000mg in Aug 2012. Cellcpet kicked in good by Jan 2013 and was able to wean prednisone down to 15mg/day.
However come July I was admitted to hospital for severe intestinal infection....Cellcept was stopped immediately. After 2 more hospital stays and worsening infection--abcess, it was determined I needed surgery and had to get off the prednisone (done in 3 wks- under doc advice). mestinon stopped after first surgery due to irritation it caused to intestines.
Just this week , my neuro put me back on only 30 mgs of mestinon twice a day. and restarted on the cellcept. She refuses to put me prednisone again since it severly covered up the symptoms of my infection thus allowing it to get soo bad. I never had a fever or pain until I developed holes in intestines.
She thought about puttting me on Immuran but stated cellcept has less side effects (and we have strong family HX of colon cancer). and since I seemed to tolerate the cellcept before she opted for that.
Please remember to wear sunscreen or cover up since I have been told by all my docs Cellcept def increases our risk of skin cancer ..and get checked by dermatologist.
hope this helps!!
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And thanks for the details.
Still building a picture in my mind of what the docs are trying to do.
I've got prostate cancer (don't worry, it's only T1C with Gleason 3+3=6) dx in 2007. Now my urologist wants to do another biopsy, but says he'll have to wait until I'm OFF the cellcept. HAH! - I told him I'll be on it the rest of my life. He doesn't know what to do and as far as I know, he hasn't consulted with my neuro. It's up to me, I guess, to wend my way thru what's left of my lifespan, hoping for enough information to make decent (if not perfect) choices. I owe it to my wife who sort of depends on me.
Since cellcept slows down our healing (as evident with your cuts), that is prob. why your urologist wants you off, so you not get infection from biopsy. Also cellcept reacts with certain antibiotics,sometimes effecting how cellcept works and other times effects how antibiotics work. He might want you on antibiotic for biopsy.
Sounds like you need to ask you neuro, not wait for the other doc to contact neuro. Find out if ok for you to stop cellcept, for how long, and let neuro know when you stop and restart. My neuro likes to repeat baseline blood work before restarting and at 2wk, 4wk then every 3 mo intervals after restarting cellcept.
Good Luck!!!
I don't know of Cellcept interfering with much out there. It is true that certain things can be affected by Cellcept, but we have to really be thankful for this drug and our doctors for getting it to us. You really are not taking a lot of Cellcept. I take double what you take. I am a 41 year old man with seropositive MG. I can see Cellcept being effective at smaller dosages, but trials showed Cellcept effective for 2000-3000mg a day in people.
As for your problems with your cuts, make sure the doctors are aware and I would look to Prednisone to be the culprit moreso than Cellcept. All you can do is make sure those cuts stay clean, do not get infected and perhaps get some ointment ( maybe neosporin etc.) to speed along their healing.
Good luck to you!
TJ from CA
I think that on the whole, Cellcept is a little safer drug because there are fewer side effects. That's not to say that Imuran is not safe but it sounds like you are unable to tolerate it so it's not for you.
Keep in mind that some of us will never be off of prednisone. Every time I try to wean off of it, I end up in crisis. Now my neuro says that the lowest dose I'll probably ever be on is 15 mg. A bit depressing to think about but certainly practical given my situation. If you need to be off of these meds for the biopsy perhaps you can negotiate an ultra low dose instead of stopping it altogether. Just a thought... and maybe there are other options but you have to get your urologist to discuss it with your neuro.
Keep all cuts clean and covered until the skin is closed. Try bacitracin or other triple antibiotic ointment to speed up the healing process. Don't forget to expose it to air periodically to allow a scab to form. Do not pick the scabs... it only prolongs the healing.
Okay, that's enough for me. Please let us know if you figure something out.
Good luck and keep us posted. Hugs and much aloha to you.
Angie
Over the past few days, I've been using benzalkonium chloride 0.13%, once or twice a day on my pink-edged, non-healing sores. It has worked wonders. The brand I have been using is BAND-AID Hurt-Free cleansing + infection protection foam (hand pump, 2.3oz, comes out as a foam). At work, I didn't have it, so used a sanitizing towel from the first aid kit in the office. Same benzalkonium chloride ingredient in a wet towelette. Relieves the itch, reduces the pink around the edges 70%, and helps scabs form which are shrinking and falling off over several days. I think I'll stick with this and hope it helps someone else out there.
Still tolerating the Cellcept fairly well. I have noticed all of the side effects mentioned here, but it's tolerable so far.
Thanks again.