[lauralee77]

For those of you taking currently or have taken Cellcept, what was your experience like? I know if you're taking it, it's probably for organ damage. I am taking it for an unusual reason and that is to try to knock out high fevers that have been plaguing me for 3 months now. I've been in the hospital twice for about a week each time. They've given me the max amt of steroid intravaneously. This seems to help temporarily but then the fevers come back. They have ruled out every possible infection. They suspect the fevers are lupus related (even though they are extremely mysterious because lupus fevers usually just don't get that high) because all my levels have been down and I had to have a blood transfusion for my anemia, white blood cell count and platelet level was really low. I am definitely in a bad flare. They did a kidney biopsy and my kidneys are inflammed, but not damaged. Leaking a lot of protein. So i'm definitely in a flare, if they could just figure out these fevers. I'm taking 60 mg of prednisone right now along with the Cellcept. So far I have had no adverse reactions. Just some stomach pain if I don't take it on an empty stomach. I have heard some good things about Cellcept, so hopefully that will help me knock these fevers out. If not, we are thinking of the Mayo Clinic. But I would like to hear anyone's experience, good or bad with the Cellcept. Today my doc just doubled my dosage to 2000 mg a day, 1000 in the a.m. and 1000 in the p.m.

 

[sam101360]

Hi:

I am sorry you are having such a rough time of things. I hope you find relief really soon.

I am on Cellcept - 500mg 2X a day plus 5mg prendisonlone.

I did not start taking it for Organ involvement, I started because of the myalgia and athralgia that nothing could relieve. I did just have Kidney inflammation, but we started the prendisone and that put it in check very quickly.

The only issue I have with the Cellcept is the nausea if I don't take on an empty stomach, or if I eat to soon after taking. I started to feel the benefit of the CellCept after about 3 weeks, and was great for over a year before I needed to add the prendisone.

Good Luck - Stephanie

 

[raggedyann1]

Laura,

I can;t help you with the Cellcept. I did want to respond to your part about having Mayo as a back-up plan. There are a very other places with good Rheumatology clinics that have Lupus specialists or they did the last time I checked. One is Vanderbilt which is much closer to you and the other is the Cleveland Clinic. You may not have to wait as long with them and you are far more likely to get a lupus specialist. Mayo is very good but often they want to do a full workup on you, which is good, but it means you have no idea who from Rheumatology will be seeing you.

Take care,
Karen

 

[Jirel]

I'm on Cellcept and love it but not because of organ damage. My doctor decided to try it because I kept complaining about not being able to concentrate and my swelling was up and wouldn't come down. We had already run through Plaq and Imurin and neither of them worked, I'm extremely sensitive to the steroids and she wanted to keep my dosage down.

The Cellcept has amazingly helped with the concentration problems (decreased inflamation in my brain?). That was the first thing I noticed. Then in my last flare we could NOT get the inflamation down in my fingers. after a couple of months she increased my Cellecpt to 3 pills a day (from 2) and within 3 days the swelling decreased.

 

[lazylegs]

Hi Laura,

In the beginning I had some dizziness and definitely was gassy. The dizziness went away once my body got used to the drug. Presently I am on 3000 mgs. The doctor tried it to help neurological symptoms that even Prednisone wasn't helping. It took about 4 weeks to kick in, hopefully in your case it will be sooner. Good luck.

Take care,
Lazylegs

 

[LoopyLoo]

Hi Laura,

I am in the UK and started Cellcept almost a month ago - 500mg twice a day. I had some nausea and some dizziness for 10 days but nothing I couldn't live with.

I have no organ involvement at all but have had extreme connective tissue pain since January and fully expected to be put on Predisolone the next time I saw a doctor. I then saw a new rheumy a month ago who was a specialist in this area and he preferred Cellcept or Imuran before a steroid. I chose Cellcept as I'd taken part in a study where I may have had it previously and I felt I did benefit. My doc did say that for some it can take up to 3 months to feel the benefit.

The Mayo clinic have carried out studies with Cellcept and they are very knowledgable in Lupus. I hope the fevers reduce for you soon and you start to feel better.

Hugz, :hug:

Pam xxx

 

[Sage Hen]

Hi Laura,

First, I want to say that I am sorry to hear, that your having so many lupus related problems.

I have had a good experience with CellCept. I was having such severe headaches that I was going to E.R. for shots of Demerol for relief.

I still feel headaches, but haven't had to go to E.R. since taking the CellCept.

I send you best wishes, and hope you feel better very soon, Laura.

Love,
Sandy

 

[Jnp01]

When I went on a high dose of Cellcept I caught everything so my dr reduced the amount & I went on an anti-biotic for 3 months to counteract the side affects of the Cellcept (basically to knock the infections on the head). I can't remember the name of the anti-biotic but they give it to people who are at high risk of infection. I took one tablet per week. I ended up feeling good. He then swapped me over to Myfortic which I'm handling ok. Myfortic is the same as Cellcept except with the enteric coating. I have to be very careful not to go near anyone with the flu or cold etc because I pick everything up so easy when on this medication. Good luck. I hope things settle down soon.