Anyone on Cellcept?

[Sangye]

Is anyone else on Cellcept for their Wegs? I've been on it for 1.5 years, and while I tolerate it okay, we can't say I'm in remission (never have been). I have improvements in some areas, though.

However, the past few weeks, I've developed some neurological symptoms that are concerning. The manufacturer of Cellcept issued a warning to physicians this year about an increased incidence of people taking Cellcept acquiring a disease called PML. (Good thing for abbreviations--it's a mouthful) It can affect many organs, but if it affects the brain, well, it's not good. That's the area of concern for me.

We have to do a LOT of tests the next couple weeks to see what's going on. Sometimes it's a blessing to be a doctor going through all this, sometimes it's a curse. Before I even saw my rheumy's face as he assessed my symptoms, I already knew it was trouble.

If you're the praying type, would you mind saying one for me? Thanks-- I'll keep you posted as I learn more.

[andrew]

If you're the praying type, would you mind saying one for me? Thanks-- I'll keep you posted as I learn more.

You're on the list

[Sangye]

Still wading through the tests and doctor visits. A brain MRI looked okay-- no signs of PML or other nasties, like stroke, blood clots, tumors, etc.... I saw two neurologists at Johns Hopkins today whose exams found there's definitely something wrong but the brain looks clear so far. In addition to other stuff, now I've gotta do a spine MRI to see if it's coming from the spine.

I've done a lot of MRIs before-- the brain are the worst! Imagine my delight to discover the MRI at JHU is a new version (not an open MRI-- those results are not accurate, unfortunately) that is not the long, skinny tube. More like a CT scan. Coulda stayed in there all day....

Thanks for the prayers. Keep 'em coming!

[crackers]

Hugs Sue xx

[Jack]

I used to be on Cellcept and was sort of OK, but kept having minor flare ups. I switched to Myfortic and have not had a recurrence since. It must have been over 5 years now.

[Sangye]

Yeah, Jack, that's how I've been. Not okay, and in a constant state of minor flare, with joint pain, etc.... Of course, I'm also not on prednisone.

What's Myfortic?

[andrew]

It's a similar thing to Immuran. It reduces the Immune system and is commonly used as an anti-rejection drug after kidney transplants.

[Twice]

I've been on Cellcept for several years. It's OK, but Sangye's description of 'constant state of minor flare' rings bells for me. I also take a bit of pred and ciclosporin.

[MyerscoughClan]

My daughter has been on 2,000MG of Cellcept/day for the past few years, and it has worked well for her, but she also had IV of Ruituxan and that's what seemed to put her into remission. Our current problems are dealing with the damage the disease did to her lungs. Took her to see Pulmonary doctor yesterday for Bronchitus & he is sending us to a Rheumotologist he knows for a second opinion about doing another drug, supposedly better than Cellcept, I just can't remember the name of it, but it does start with an I. We have appt to see Rheum to see what he has to say about new medication, will keep you posted.

Sending positive thoughts your way.

June

[DEE]

In my thoughts Sangye DEE x