Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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brendacaytonwhite 08/13/2011

I started Cellcept two days ago and yesterday had the sickest day. I was fine most of the day, but then during the evening started to experience uncontrollable shaking and yawning along with a dull pain in my sternum. Is that normal? I think that I may even have fainted as I woke a little while later and don't even remember falling asleep. It was scary as I was home alone and couldn't even stand up to walk.

eddiesgal 08/13/2011

I'm on Cellcept and have had a few unplesant side effects, mostly with nausea and having to make a few mad dashes to the restroom, putting it nicely. The doctor reduced me from 2000 to 1500 and now I also get up with my husband at 3:30Am (I know!) and take 2 Cellcept and then right before I am ready to sleep I take the other one. It helps with the stomach distress. Please call your doctor and find out if he wants you to perhaps try something else and please keep us posted.
hugs and blessings,
Kim

luckybee 08/13/2011

Of course it's Saturday, so it might be difficult to reach your doctor. Don't take another dose until you talk to him or her. I had a very serious reaction to my 3rd dose of CellCept and ended up in the hospital for a week. Take care.
~Lucky

deleted_user 08/13/2011

I agree - I would call your doctor on Monday - you can also google cellcept and it lists the side affects. I have been taking cellcept for over a year and had nausea but I take it with food and have the GI issues but take Yapuit (a probiotic) at the grocery store and it seems to help.
Let us know how you are doing -
Love Hugs and Prayers :-)

deleted_user 08/13/2011

Hi brendacay -

Your comments about being alone are alarming, and I can understand being frightened about this situation. I know I am not always in reach of a telephone either.

I have been taking Cellcept for a while with only minimal occasional nausea. I don't think the symptoms you describe are normal at all and they may or may not be related to the cellcept. It might be another issue. I agree with the idea of stopping the cellcept until you can contact your doctor. (stopping cellcept for a day or so isn't going to cause problems - it can take up to 6-8 weeks for it to really be effective)

If you continue to have these symptoms, a call or trip to the ER might be in order. Please let us know how you are doing.

Blessings, Kathy

brendacaytonwhite 08/14/2011

I did send my doctor an email on Friday and plan to contact him first thing Monday morning. My daughter has wanted me to stop the Cellcept until I talk with him, but I was more afraid of interrupting the dosages. I haven't had the problems again since that day, but the nausea and stomach has continued and is requiring me to sit the majority of the time.

Thank you all for your support. This is so unusual for me.

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