1. < Autoimmune Diseases

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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Mentor
John, Volunteer Mentor | @johnbishop | Jul 31 12:52pm

Hello @pamelalaa, There are quite a few different discussions on CellCept. You may want to scan through the list of discussions and comments others have made to learn what has been shared while you wait for members to respond. Here's a link to the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=CellCept

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siosal | @siosal | Jul 31 8:50pm

I used it for a couple of yrs. No problems at all just hated the schedule of when to take it. Went off when it was thought I was in remission. Next tests showed ANCA vasculitis. Then I started Rituxan. Much easier since it’s an infusion every few months

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jimc3 | @jimc3 | Aug 4 5:08am

I have been taking. 2000ng for several years. No side effects noted and effective for generalized MG.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Aug 5 6:33pm

@pamelalaa I’ve been CellCept for about 6 years and had no problem until 2022. I got this serious, uncontrollable diarrhea which the neurologist said was life-threatening. I was switched to Myfortic, another, lesser form of CellCept. So far, I’m doing okay. Cross your fingers!!

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pamelalaa | @pamelalaa | Aug 5 7:16pm

I’m so glad to hear you recovered well! Infection is definitely my biggest concern. So great to hear there’s another option too.

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lilbit15 | @lilbit15 | Aug 11 1:41pm

Hi! I've been on CellCept for 8 years and it's been great! Started on it to help with my Cryptogenic Organizing Pneumonia, which it did, but took a while. I started noticing improvement then in my mobility. I also have multiple autoimmune, interconnected tissue disease DX's. Just to check to see if it really was the CellCept that helped with my mobility, I went off of it for 3 weeks with my Rheumatologist'approval. My mobility decreased significantly so back on I went. It has been good for me. 🙂

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2 replies
pamelalaa | @pamelalaa | Aug 11 1:48pm

Very encouraging! Thank you and glad you’re doing well :).

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ksnak | @ksnak | Aug 12 8:59am
In reply to @lilbit15 "Hi! I've been on CellCept for 8 years and it's been great! Started on it to..." + (show)
@lilbit15

Hi! I've been on CellCept for 8 years and it's been great! Started on it to help with my Cryptogenic Organizing Pneumonia, which it did, but took a while. I started noticing improvement then in my mobility. I also have multiple autoimmune, interconnected tissue disease DX's. Just to check to see if it really was the CellCept that helped with my mobility, I went off of it for 3 weeks with my Rheumatologist'approval. My mobility decreased significantly so back on I went. It has been good for me. 🙂

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I took CellCept for organizing pneumonia caused by Covid last year. I had to stop all of my immunosuppressant medications for RA when I was diagnosed with Covid pneumonia. The CellCept controlled my RA symptoms pretty well while I was on it. I did have to take a prophylactic antibiotic with the medication due to increased risk for infection.

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