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...
Can anyone provide me with as much information as possible about cellcept? Last week I was in an MG crisis at the doctor's office and was taken by ambulance from his office to the hospital. I spent 6 days there and received daily ivig treatments. All of this was pretty scary to me because up until then, other than the weakness and some trouble breathing I didn't think I was doing all that bad. Actually, I was feeling guilty that I wasn't as bad as so many of you.
While in the hospital the doctor that was filling in for my neuro (he was out of town) mentioned something going low having to do with my kidneys but then he said the levels stabilized so he kept up the rest of the treatments. Today, when he told me I could go home, he said that my neuro said that I was to take prednizone and cellcept. He told me it was critical that I contact my neuro and see him within 24-48 hours and see my primary care doctor within a week. The doctor said that there were some serious side effects from the cellcept and so my neuro has to keep a very close watch on me.
All of this really scares me. I am one of those people that seem to experience any side effects of medicine. For example, prednizone causes me to have severe heart palpitations which the doctor says can happen but is extremely rare. So, what will cellcept do? Can it damage my kidneys or some other important organ? Please help me to know what to expect.
While in the hospital the doctor that was filling in for my neuro (he was out of town) mentioned something going low having to do with my kidneys but then he said the levels stabilized so he kept up the rest of the treatments. Today, when he told me I could go home, he said that my neuro said that I was to take prednizone and cellcept. He told me it was critical that I contact my neuro and see him within 24-48 hours and see my primary care doctor within a week. The doctor said that there were some serious side effects from the cellcept and so my neuro has to keep a very close watch on me.
All of this really scares me. I am one of those people that seem to experience any side effects of medicine. For example, prednizone causes me to have severe heart palpitations which the doctor says can happen but is extremely rare. So, what will cellcept do? Can it damage my kidneys or some other important organ? Please help me to know what to expect.
I also take prednison and cellcept. I get the palpatations... The doctor will monitor you blood work due to the cellcept can lower your white blood count. It can also upset your stomach but that part only last a few weeks for me and it was not every day. All these meds affect each of us different. I started at 1000 mg of the cellcept a day now taking 2000 at day and was told will be going to 3000 which is the max. My neuro's goal is to get off the predisone, I just know if it was not for both meds I would be a whole lot worse, then I also take IVIG once a month. I hope you get to feeling better. Hugs Annette
Best wishes for peace,
TJ
100mg/day of prednisone took me from being comatose - yes, that oft-quoted horrific code blue experience of mine 3 years ago - to being asymptomatic within two weeks. IVIG, PLEX, CellCept and Imuran couldn't do that heavy lifting but prednisone could. The flipside, like always, was cataracts in both eyes, hypertension, diabetes and a moon face - all of which are gone now, after two years on Imuran and a subsequent reduction in my prednisone dose to 5mg/3mg.
I can't speak much to any of the liver function tests or any of the other exotic blood tests since I never do them, but all my other blood work shows me to be as fit as a racehorse.
Curt
Curt