cellcept for scleroderma and lupus

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New Member

Date Joined Apr 2012
Total Posts : 1
   Posted 4/7/2012 10:43 AM (GMT -6)   
Hello everyone,
I am new to the board and would like to say hi to everyone! I have a question about Cellcept. I take 4,000 mg (8 a day) along with Plaquenil and about 10 other medications for Lupus, Scleroderma and Raynaud's.
I have noticed on my medication bottle it does say take the Cellcept on an empty stomach. I dont always do that though. I have noticed on here some say it doesnt matter and some say absolutely do not take it with food or other meds. My rheumy said its ok to take the meds in one big hand full at once but I didnt ask him about taking them with food. Its such a pain to take so many meds twice a day I would rather just cram it all in my mouth and gulp it down to get it over with.
I have been taking them since November 2011. I was diagnosed in October 2011 when my skin just suddenly turned hard and tight. He says I will continue to increase it and take it over another 16 months. I am not sure I can take it anymore because it already has caused me to loose close to 50 pounds within 6 months, makes me tired and sick and weak.
I have a 7 year old and 5 year old so it is very hard to cope with all this and take care of them. The only family near me is my husband and he is a great help but he has to work so I am with them alot of the time alone.
Anyway...I'm rambling on..my question was....am I taking the meds wrong because so far I am not noticing ANY improvement in my condition and all these meds make me sickly and weak and I think I look horrible with the scleroderma as it is. I feel like telling my doctor I just cant take it any more and want to stop it all.
Thanks for reading and sorry for the long post! Looking forward to any advice or opinions for I am losing hope. It gets tough some times to keep a smile on my face for my kids and is so exhausting to struggle to stay out of a depression. But I do the best I can to make everyday normal for them and pretend mama is ok.

Veteran Member

Date Joined May 2005
Total Posts : 7725
   Posted 4/7/2012 11:24 AM (GMT -6)   
When I took Cellcept I always took it with a handful of other meds and with food. For me, it was a miracle drug and gave me back my quality of life.

However, I know it doesn't work for everyone with Lupus, and I have no idea of it's track record with Scleroderma.

I would make a Dr appointment and have a long talk about how you are feeling, and what you are thinking about the meds. Perhaps you can devise some changes to see if you can get better results. Please don't change or drop your meds without the help/direction of a physician -- some of our meds (esp.prednisone) can have bad (possibly fatal) effects if we drop them too soon.

Also, you might check the website www.drugstore.com/pharmacy/drugchecker/default.asp -- it is a fairly good drug interaction checker - I find I feel better if I double-check for drug interactions that the drs/pharmacists might have missed. It can also tell you some foods to avoid.

Hope you feel better soon.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 4/7/2012 12:31 PM (GMT -6)   
I know that plaquenil needs to be taken with milk or food.

Veteran Member

Date Joined Dec 2008
Total Posts : 2386
   Posted 4/7/2012 1:17 PM (GMT -6)   
I got deathly flu symptoms and hives on cellcept. I reported it as an allergic reaction and stopped medication.

www.drugs.com is a good reliable place to check on all medications, plus a interaction checker.
"The Walking Medical Mystery"

Too many Allergies / Too many RXs & DXs

A Rare Gem for Doctors and Guinee Pig
~Medical Caregiver and Doctors Worse Nightmare~

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 4/7/2012 2:03 PM (GMT -6)   
Welcome! I am so sorry you are having such a rough time.

CellCept has worked wonders for me after a trial of Imuran (bad reaction to the Imuran). I take the CellCept on an empty stomach in the morning and with a snack in the evening. I would make a list of concerns and questions and go in and talk to the doctor. You will feel better if you have some kind of idea what to expect and when you should be concerned as far as changes in your symptoms.

"But I do the best I can to make everyday normal for them and pretend mama is ok."

Something to think about. What is happening to you is not normal and you are not ok. You don't want to scare them but they probably already know that something is wrong. Perhaps a talk explaining (in simple terms) what is happening to you would be something to consider. Children tend to blame themselves for anything bad that happens to a parent. Your children would probably love to feel that they can help you out on your particularly bad days. And if you are just not up to certain activities on some days, tell them you need a "good, cuddle day" with them. Rest as often as you can. Your children will have more responsibility as you all adjust to this illness, but there are positives to that. They will be more self-sufficient and independent as well as have more compassion for others. try to look for bright sides - it does help!

Hope you feel better, soon. This board has so many understanding people - that has helped me out so much over the years. Hope it will do the same for you!
Take care, Fran

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Zyrtec. Aciphex, Nasacort, Prozac, Ambien CR, CellCept, Zantac, Bactrim
Daily Supplements: Calcium, B-100 Complex, Daily Vitamins.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Vicodin, Prednisone.

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 4/7/2012 9:25 PM (GMT -6)   
Generally cellcept is to be taken without food but in some instances with food.
These questions can easily be answered by your pharmacist or doctor.
Every case of lupus responds to treatment differently and if cellcept if not working for you you should discuss alternative treatments with your doctor.  Many of us have gone through treatment hell to find the right med or combo of meds to control lupus.  It is also my understanding that cellcept takes several months or even a year to become fully effective. 

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 4/8/2012 9:39 PM (GMT -6)   
Welcome to our forum Brightstars. I started taking Cellcept when lupus was playing games with my brain. My rheumy described my speach as a record skipping continuously. I couldn't drive due to double vision and easily got lost taking the bus. Two weeks after taking Cellcept I could talk again. I took Cellcept for 2 years, but recently stopped so I could have surgery. Rheumy thought it would be a good time to take a break.
I feel so badly that you have scleroderma too. Bill always gives good advice and this time is no different. Everyone responds differently to medications. Also Lynnwood suggesting you have a long talk with your rheumy is very important. As for me, I never underestimate the power of proper anti-depressants. These drugs can help brighten your mood and therefore your family's.  You have so much going on, please try to make it as easy as possible along with the cuddle days. Feel free to ask questions, vent, or just talk anytime. There is always someone here to listen. Love and hugs, Butterflake aka Donna 

Veteran Member

Date Joined Jan 2007
Total Posts : 610
   Posted 4/9/2012 7:18 AM (GMT -6)   
My rhumty told me to take it without food because it absorbs better, since then, I take them with empty stomach along with all other mes. I am taking cellcept since 2008, but had taken it a year before restarting back on year 2008. It works wonders on me, and I am completely off prednisole.
DX SLE 1988; APS (Antiphospholipid Syndrome); High-Blood Pressure; Verapmil 40 mg bd (for migraine headaches), Cellcept 2000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Simvastin; Candesartan 4 mg
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