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Regular Member

Date Joined Apr 2003
Total Posts : 104
   Posted 12/16/2007 5:39 PM (GMT -6)   
Hi Everyone
It's been a while since I've posted...I hope everyone is doing well. On top of everything else that is going on, the pericardial effusion that I have had for years is now starting to give me problems ( pain, shortness of breath ). My cardiologist is trying cellcept to decrease the volume of fluid and I was wondering if anyone could tell me anything about taking it? I am on my second day and take 500mg twice a day.
I have not had any side effects from it so far. I hope it works because if it doesn't, he wants to drain it, and the thought of that terrifies me.
I had to go to the emergency room sunday morning with a high fever....doc did blood work and urinalysis and decided it was a flare. Whoopee! So I was given a schedule to adjust my prednisone for these sudden fevers. Does anyone else do that? A hard chill followed by fever? It happens every so often and totally wipes me out.
Am now taking lasix to decrease swelling in legs, as if I wasn't spending enough time in the bathroom! tongue
I have asked my rheumy and others exactly what a flare feels like and have never had a straight that because it is different for everyone? Mine seems to be fever and fatigue, but if it is, i have alot of them. It's weird, I've been diagnosed for 6 years and I'm STILL trying to learn what I can about being a lupie. I try to keep my spirits up, I know stress can hurt....but it can be frustrating because there are so many things I used to do that I can't anymore or just don't have the energy to anymore.
Sorry to run on and on....If anyone can help me out with info on cellcept and flares, I would appreciate it greatly.
Mixed Connective Tissue Disease, SLE, scleraderma, Polymyocitis, Hypo-thyroidism
Prednisone, Procardia, Synthroid, Reglan, Nexium, Vitamins and supplements.

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 12/16/2007 6:07 PM (GMT -6)   
Unfortunately a flare is different for every person. Worse, you can have a mild flare and acute flare depending on how things are going. You can also have a constant low level of activity or constant high level of activity with flare ups that make it worse without ever truely having the symptoms go away for any period of time. I wish I had a better answer for you. How a flare goes for you depends on what your disease is like, your other conditions, and chance. Yep, not all flares are alike even in the same person- though you can have many flares that are nearly identical you will sometimes get the oddball flare that is nothing like the others.

I personally haven't had fluid drained from my heart, but my grandpa was on lasix due to congestive heart failure towards the end and that involves fluid around the heart so maybe the lasix will help some. If you have to have the fluid drained understand that may be scary but dying would be worse and if the fluid stays there it could kill you depending on how bad it is.

I have not had the dubious pleasure of being on cell-cept but I know it is a chemo drug- Imuran used to be a chemo drug but now it is used more for transplant patients and autoimmune patients because they found better drugs for cancer. I suggest you buy THE LUPUS BOOK by Dr. Wallace as he gives valuable info. My copy was stollen (yeah I know who steals a book about lupus and whomever did must have needed it a lot more than I did since that was all they took) so I need to replace it. Be sure you get the most recent copy as it is updated when new information/meds come out.

I wish I could help you more, all I can do though is tell you what little I know and remind you I am not a medical professional, I have just watched family members die over the years- some from AI diseases like lupus, some from cancer, and others from age or some unknown cause. Always verify information given with your doctor just to be safe. I hope things improve soon.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone

Regular Member

Date Joined Apr 2003
Total Posts : 104
   Posted 12/16/2007 6:13 PM (GMT -6)   
Thanks Redrose
The flare info helped some and I will definitely check out the book. Hope you have a pain free Christmas.
Mixed Connective Tissue Disease, SLE, Scleraderma, Polymyocitis, Reynaud's, Hypo-Thyroidism, Pericardial Effusion
Prednisone, Procardia XL, Methotrexate, Reglan, Lasix, Nexium, Potassium, Folic Acid, Synthroid, Cellcept, 81mg Aspirin, Vitamin D, Multivitamin, Extra Strength Tylenol, Vicodin.

lupus fighter
Regular Member

Date Joined Nov 2007
Total Posts : 50
   Posted 12/16/2007 9:48 PM (GMT -6)   
Hi Donna,
I was only diagnosed with Lupus in January 2006 but had been suffering with symptons for several years without being aware of it. I do take Cell Cept I have been taking it for several monthes my doctors strated me at the dosage you are currently on but my dosage had to be increased because I had a lot of swelling and fluid in my lungs and I had to have it drained several times. As the dosage has increased I have not had to have an more thorancentis( I had fluid on your lungs because of all of the pain and shortness of breath. I defintely think the Cell Cept will help you. I also took Lasix before the increase in Cell Cept. The Cell Cept msy make you nauseated so you may have to take something for nausea.
Loving Life 
Diagnosis Lupus Sle 2006, Fibro 2006, Nephirits 2007, anemia 2005,  Hypertension 2006.
Plaquenil 400 mg, Prednisone 15 mg, Cell Cept 3000 mg, Diovan 320, Procardia 120 Mg, Fosonopril 80 mg, Iron supplement, Calcuim W/ Vitamin D, Folic Acid, Tramadol

New Member

Date Joined Feb 2012
Total Posts : 3
   Posted 2/5/2012 12:32 AM (GMT -6)   
please someone help i in a lot of pain in my right tight the lupus has eating it doem to the bone almost it burns real bad all the time pain meds dont work doctors dont know what to do any more im only 38 years and reellike im 80 i have deep ulser on my leg any one else have thistrouble
i have a rare form of lupus . i have just had to stop work a year a go i am trying to learn how to deal with all this . i have had lupus for 18 years

Veteran Member

Date Joined Jan 2007
Total Posts : 607
   Posted 2/5/2012 4:25 AM (GMT -6)   
What kind of meds are you taking, Shellybooboo?
You've only mentioned pain meds, but if you are having lupus, the rhumty should prescribe you some other meds for lupus instead of pain med. Usually if you are on a flare, a common solution for a rhumty will be increasing the dose for a period of time and then taper it down (if you are on Prednisolne).
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

Regular Member

Date Joined Sep 2011
Total Posts : 51
   Posted 2/9/2012 11:38 AM (GMT -6)   
I'm on 2,000 mg of CellCept a day, and I LOVE it.  My joint pain and fatigue is almost completely gone.  The only side effect I've noticed is an increased frequency of diarrhea.  Not fun, but it's also not the end of the world.  By far, out of all the lupus drugs I've tried, this one has been the easiest for me to tolerate.
But - keep in mind - we are all different, and the way we react to medications differs as well!
Good luck, keep your chin up!
dx: SLE 07/2011, OCD 2006, osteoarthritis 2002
rx: CellCept 2,000mg/day, NSAID for pain, zoloft 200 mg
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