What's your experience with Cellcept?

[ArlaMo]

We tried the azathioprine without success (for maintenance) so I'm picking up my Cellcept rx tomorrow. What side effects/issues, etc. should I watch out for?

[Al]

We tried the azathioprine without success (for maintenance) so I'm picking up my Cellcept rx tomorrow. What side effects/issues, etc. should I watch out for?

Sorry, Arla. I don't have direct experience. The book on CellCept (AKA Mycophenolate) suggests that it is fussier to take than AZA. It needs to be taken on an empty stomach, and away from other drugs (apparently, there can be sever different kinds of drug interactions). Please let us know your experiences; for me, I figure it will be next up if the AZA doesn't do the trick.

Al

[Rose]

I have been taking Cellcept for almost 4 years now. Could not tolerate Imuran and MXT was never used because of kidney issues. Apart from a small recent flare which was not reflected on the blood work, Cellcept seems to be working well for me and I am tolerating it well. Went on the generic about 6 weeks ago and so far, so good. Cellcept can have serious side effects like all these toxic drugs .... I always 'google' drug side effects just to be aware.

[Sangye]

You don't need to take Cellcept on an empty stomach. That's generic advice for most drugs but neither of my docs at Mayo AZ nor JHU had a problem with me taking it with meals. I had stomach pain and acid reflux if I took it on an empty stomach.

The most common side effect is diarrhea. It can be anywhere from mild to severe. Some people can't continue taking Cellcept because they have it so bad. Otherwise, most people don't notice much while on Cellcept.

[ShaniBooT]

Our doctor just took Dean off the AZA because it was making Dean sick. I asked about Cellcept to our doctor and he said that it was worse then AZA. Right now the doctor just put his pred up to 20 MG from 10 MG. I will tell our doctor about what you said and see if Dean might be able to take Cellcept. We know Dean has to have something.
Barbara and Dean

[ArlaMo]

I couldn't tolerate the AZA either, Barbara - severe vomiting and diarrhea, even at a low dose. I just took my first dose of Cellcept, so I'm hoping it will be ok. I'm a little nervous as I already have some acid reflux (I think mostly genetic as both my mom and dad have it) and tend to get diarrhea easily lately.

[aewaustin]

I think I probably had an abnormal reaction to Cellcept but it was bad... Back then I had a horrible doc and I told him that something was wrong and he kept upping the dose. In the end my kidneys were so jacked up that I went to a kidney doc and she put me in for a biopsy the next day (I had a history of Weg's with kidney involvement). So my reaction was that I could not sleep and I felt like I was being electrocuted at a low voltage. It was a really rough month. The sleep thing was so bad that I was taking 10 mg of Ambien at 10pm and 2am and still not sleeping. I know this is not a normal reaction, but just a heads up. Back when I took this I was also not in tune to the fact that meds could cause such reactions, have a much better idea of what to look for now.

[Sangye]

Our doctor just took Dean off the AZA because it was making Dean sick. I asked about Cellcept to our doctor and he said that it was worse then AZA. Right now the doctor just put his pred up to 20 MG from 10 MG. I will tell our doctor about what you said and see if Dean might be able to take Cellcept. We know Dean has to have something.
Barbara and Dean
Most people seem to tolerate Cellcept just fine. The main side effect is diarrhea, which can get pretty bad for some people and force them to stop the drug.

[ShaniBooT]

Dean was on a low dose too and he only took it for about 3 weeks because is really made him sick. He had to spend 2 days in the hospital with fluids. Please let us know how you are doing on Cellcept.
Barbara & Dean

[LisaMarie]

I got sick with both....elevated liver enzymes and horrid joint pain and resp issues...I am just wired weird....even the mos remote side effect tend to sneak up on me...I even have Dr Specks scratching his head at times.....so i am on pred and waiting for RTX again...scared but hopefully I will weather it better this time since I only get 2 dose 14 days apart...now if my IGG would just retrurn to normal...no mask for a bit would be nice

[elephant]

I am doing just fine on Cellcept, I have been on it for over two years.