CellCept

Posted by pamelalaa @pamelalaa, Jul 31 12:24pm

I have a very complex situation but really wondering if anyone can share their experience using this drug. I’m dx’d with multiple autoimmune diseases and maybe a paranroplastic syndrome. Lots of trouble getting care but hopefully on the right track to stabilize for some surgery. This med is being suggested in lieu of IVIG which Medicare wouldn’t cover. Would love to hear about any first hand experiences with CellCept.

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wcburns2 | @wcburns2 | Aug 29 4:19am

In reply to @pamelalaa "Could you be a little more specific about the type of side effects?" + (show)

Pamela, if you are still evaluating Cell Cept, I forgot to mention they have me get a blood test every 3 months to ensure I do not develop negative issues. I and curious if any other people that takes it or the generic version get regular blood tests also.

pamelalaa | @pamelalaa | Aug 29 4:46am

In reply to @wcburns2 "Pamela, if you are still evaluating Cell Cept, I forgot to mention they have me get..." + (show)

I do know they will want blood tests but I wasn’t sure how frequently.

snowfire | @snowfire | Aug 30 10:16am

I've been taking Cellcept for many years and I'm not required to get blood tests routinely. I am working on getting off of the Cellcept and on to Rituxan infusions instead. Does anyone with ELP use it? What is your experience with it - any side effects? Thanks for any info you can provide.

robinlundblade | @robinlundblade | Aug 31 7:29am

In reply to @snowfire "I've been taking Cellcept for many years and I'm not required to get blood tests routinely...." + (show)

I take Cellcept and started Retuxamab end of May. I did feel a bit under the weather after but no huge side effects.

Becky, Volunteer Mentor | @becsbuddy | Aug 31 5:34pm

In reply to @kerriihart "Horrible side effects, absolutely no response to treatment to lower extremely high SED rate. Primary and..." + (show)

@kerriihart I’ve been on CellCept for 6-7 years. I did have an adverse reaction to it but as soon as my doctor found out, she switched to a different form of mycophenelate which is doing a great job. I suffered with diarrhea for about 10 months. The doctor said it was a serious allergic reaction. I totally trust my doctor!

kerriihart | @kerriihart | Aug 31 8:12pm

In reply to @becsbuddy "@kerriihart I’ve been on CellCept for 6-7 years. I did have an adverse reaction to it..." + (show)

Mycophenelate is the generic form of Cellcept. I'm not sure what your taking it for but three of my Doctors do not recommend it for Autoimmune disease. Good luck!

snowfire | @snowfire | Sep 1 10:20am

Is anybody using Rituxan infusions to treat ELP? I hope to start using it and would like to know about any side effects you might have experienced. Thank you!

renm | @renm | Sep 2 3:41pm

In reply to @kerriihart "Mycophenelate is the generic form of Cellcept. I'm not sure what your taking it for but..." + (show)

I have taken Mycophenolate for 7 years for ILD, Autoimmune Hepititis, and MCTD. It was recommended by my rheumy and pulmonologist in San Francisco who worked together to help me. It has worked very well for me along with 5 mg of prednisone. I have not had any major flare ups since I started. The one thing I do have is bone loss and diabetes probably due to many years of higher doses of prednisone before the Mycophenolate.

robinlundblade | @robinlundblade | Sep 3 7:43am

In reply to @renm "I have taken Mycophenolate for 7 years for ILD, Autoimmune Hepititis, and MCTD. It was recommended..." + (show)

This is what I am so afraid of. But what is the alternative? If not taking this stuff I wonder what life would be like? I am currently on 15 mg of prednisone. 1000mg Cellcept 2x daily and infusion of Retuxamab. Do you feel the same? That without it life might be way worse?

pamelalaa | @pamelalaa | Sep 3 8:56am

In reply to @robinlundblade "This is what I am so afraid of. But what is the alternative? If not taking..." + (show)

I’m ready to take the chance. I’ve been on between 10&20 mgs of prednisone for the better part of a year but tapered down to 10 successfully about two weeks ago. It’s so hard. MG, APS, SLE, gout, etc… plus a few ill defined tumors - it’s a lot. My A1c just popped up after my last blood tests and I have facet arthritis and DDD already that’s blowing up, I can tell. I’m mostly in bed but trying to eke out a little more quality if possible. I think for people like us there’s always a trade off with treatment and I’m ready for a little more risk.