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Experience With CellCept
Although I’ve been in remission for years, I was on multiple drugs for a long time. One of them was CellCept. Even though it helped me, it was a very stressful medication to take.
I had to have blood work done every 6 weeks because it suppressed my immune system. I was susceptible to many illnesses because of this drug. It was weird to think it could help my MG but hurt everything else.
Are you on CellCept? Have you taken it in the past? What was your experience like? Did the drug cause you anxiety and/or stress?
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10 Replies
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I have been on Cellcept for about two years. I started on it as the neurologist was taking me off Prednisone. I have not had any problems with it nor do I take any blood tests because of it. Why are you having to have blood tests?
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I’ve been on Cellcept since 2018. I take 1500mg twice a day. At first I was on 60mg prednisone along with it but I was able to wean off of it this year.
Cellcept took about 9 months to really kick in for me. I had some hair loss but nothing drastic.
For me, it’s been a game changer. I am pretty much able to do everything I did pre-MG. I’m grateful to be able to take it.
I was wearing a mask in public before Covid, though, because of the suppressed immune system. I haven’t had so much as a sniffle though.
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I have been on Cellcept for six years. As far as I know, I have had no bad effects. I see my neurologist twice a year and that is when I have my blood tested. I had some bad side effects when I was on prednisone and was glad to get off it. I don’t think I have ever been in “remission “ as I am always weak, sometimes worse than others, but at 72 years old I should not expect to be as strong as I remember being. When I go to my therapy pool in the morning, everyone asks how am I doing. My response is since the grass looks great from the top, it is a start of a great day.
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I took Cellcept for 5 years and I have sever Emphysema and since my immune system is compromised I get lung infects often about two months I quit taken Cellcept because I thought i was in remission and had no problems for 5 months and MG came back worse my whole body hurt . went back on the Prednisone and cellcept again and sitll have two weeks of prednisone to take hope all works out and you guys are great and i wish all of you the best .
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I started 2000mg of CellCept in June 2021 along with 30mg of Prednisone. I experienced great fatigue and shortness of breath to the point I could not do the slightest task. I am getting blood work done every month. As my Neurologist is weaning me off of the Prednisone (currently 8mg) my strength and endurance is improving. That is the good news. I am a Permanent Deacon in the Catholic Church. Because of my suppressed immune system, I wear a N95 mask at all times and have had to curtail a lot of my ministries that brings me into close contact with people. This really bothers me because I was ordained to serve God’s people and not try to ignore them. From what I am reading of other peoples experience, the CellCept is a long term treatment. Very depressing.
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I am currently taking 25 mgs daily of prednisone along with 60 mg of pyridostigmine BR (mestinon) 4 times daily for my MG. I have regained my swallow function and have had my feeding tube removed. However, I still have severe ptosis (drooping eyelids) but no other symptoms of MG (e.g. muscle weakness or pain in arms or legs). The prednisone is playng hell with my arms and legs with significant bruising below the surface of the skin that sometimes breaks out into open, bleeding patches of skin. My neurologist has suggested I consider CellCept as an alternative to prednisone. It, however, takes 6 to 9 months to become fully effective and I would have to remain on prednisone until I can be weaned off it. Plus monthly blood tests to check my white cell count and immune system (and always the possibility of having to stop the CellCept based on blood test results). In addition, it makes you more susceptible to certain cancers such as lymphoma and skin cancer. In my case I have a history of basal cell carcinoma (skin cancer) with a number of biopsys and spot removals. This, of course, gives me pause for thought before starting CellCept. One question might be whether or not CellCept is more effective for certain MG symptoms — in my case, ptosis. I don’t have an answer to that question yet nor does my neurologist. Still seeking, still healing, still moving forward.
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I was on Cellcept for several months and it blew up my liver enzymes and my lipids. I tapered off of it immediately. I’m back on Imuran which doesn’t seem to have those issues for me. My neuro has bloodwork drawn every 1 to 3 months.
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I have been on 2000 mlg per day for almost two years. I have not had any side effects that I am aware of. I know that is an immunosuppressant but either because of staying as close to home or simply good luck, I have not been sick at all since starting to take it.
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My Nuro wants to put me on Cellcept so he can reduce my Prednizone from the 18 mg/day. Not sure if I should after he told me about some of the side effects. Over all do you think that I should. I have been on Mestinon SR 180mg/day and 18 mg/day of Prednizone since 2018.
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I was diagnosed in August 22, and experienced ocular and some gMG symptoms including chewing, swallowing, and fatigue in my legs. All symptoms have steadily improved.
My neurologist started me on Cellcept in March and we are planning to start weaning me off 20mg Prednisone in June. The only side effect is a real high (like 3 beers!) with the morning dose. I reread the box warnings and they strongly recommended taking Cellcept on an empty stomach. This has helped a lot. In the last 6 weeks I’m able to put in 7-8 hours remodeling house without any leg fatigue or head droop.
I’m looking forward to weaning off prednisone.
Anybody else getting a buzz from Cellcept?
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My story is just the opposite, my best day ever since my diagnosis of MG in Dec. 2020 was the day I stopped Cellcept! I had terrible GI issues on Cellcept. Of course it was given to me as a way to wean off of Prednisone, just as many of you also mentioned. I have osteoporisis so needed to end prednisone. I started Vyvgart several months later and although I have not had a single side effect, the drug truly has not helped me as much as IVIg. My doctor has just changed the frequency of Vyvgart from 8 weeks down to 6 weeks, and upped the dosage. Has anyone else had their dosage changed…please someone tell me yes as I would feel much better about this.
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