Anybody else on CellCept for lung involvement?

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New Member

Date Joined Jun 2016
Total Posts : 2
   Posted 6/24/2016 7:52 PM (GMT -6)   
I began taking Cell Cept two months ago to control lung involvement due to Sjogren's. I am taking 500 mg 2x a day right now but my rheumatologist says most people need 750 to 1000 2x a day. Is anybody else taking this? What dose do you take and is it working ?

Forum Moderator

Date Joined May 2005
Total Posts : 7447
   Posted 6/24/2016 9:07 PM (GMT -6)   
Cellcept was the miracle drug that put my Lupus into a "quiet" mode (they don't say "remission" for auto-immune diseases).

My dosage was increased up over time to a max of 2000 mg daily.

With auto-immune diseases, different medications work for different people, and they don't really know why. The 3 meds that are mix-n-match, trial-n-error are Imuran, Cellcept, and MTX. Imuran did nothing for me, but Cellcept was definitely a MIRACLE in my case. It does take a while to work.

I would follow my rheumy's instructions, sounds like you are on the right track.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

New Member

Date Joined Jun 2016
Total Posts : 2
   Posted 6/24/2016 10:42 PM (GMT -6)   
Thanks Lynnwood! I appreciate your input!

Veteran Member

Date Joined Aug 2006
Total Posts : 9657
   Posted 6/28/2016 1:02 PM (GMT -6)   
Wow, good to know your doing great! keep us posted...hope it continues for you.
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...

Forum Moderator

Date Joined Jun 2006
Total Posts : 1643
   Posted 7/3/2016 4:28 AM (GMT -6)   
Hi Andreja2003. I've had problems with my lungs for years, but it is because I'm prone to catch pneumonia. I've also been taking 2000 mg (2 grams) of Cellcept daily for at least 3 years for my Lupus. I'm absolutely certain it helps my Lupus, but also my rheumy refuses to lower the dosage. Because it helps I don't have a problem with that. For a long time it really helped my fatigue and I think it still helps so I don't want to change my regimen. Personally I think it's a great med. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry
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