Mycophenelate/ Cellcept sude effects??

[freakyschizogirl]

Hi all.

I flared just before Christmas so was put on RTX infusions - 4 one week apart to get me into remission (plus Pred). This worked and I am currently in remission but I am also on a clinical trial called Ritazaram. This trial is geared up to see what gives a more lasting remission RTX alone or RTX in conjunction with another immune suppressant.

After I was in remission I was put on AZA which I was sensitive too and had some nasty side effects so was taken off of it 3 weeks in. I am now on Cellcept and having some side effects such as a bout of vertigo, bad fatigue, unable to sleep and some sensitivity when breathing. Is this common with Cellcept and should I be calling the hospital in case I am sensitive to the Cellcept like I was with the AZA??

I am new to these 2 drugs altho I have been on MTX before but it did not hold remission for me. I am worried in case I am sensitive to the Cellcept which means I will probably have to come off the clinical trial :thumbdn:

[Donnak06]

I have been on Myfenax which is the generic brand of Cellcept for 11 months. I did find that in the first few weeks I had stomach pain, and a lot of fatigue. I can't remember any problem with breathing. These side effects only lasted about 3 to 4 weeks and now I don't have any side effects. I would maybe check with the doctor that these are side effects, if they are they should get better as your body gets used to the Cellcept. It does help if you take it with food until you get used to it.

[MikeG-2012]

I was on it for almost two years, and the only side effect I remember is that it didn't work for me and caused a pretty major flare up.

Maybe a fatigue now and then, but I haven't had many side effects from any of the meds--except the prednisone!

[freakyschizogirl]

I rang Addenbrookes who asked me to see my GP.

Talked through my symptoms and my GP says her advice is to stop the Mycophenolate.

This means I a back to Addenbrookes next week who will either start me back on the Mycophenolate at a low dose, try me on something else or its back to the RTX but that will mean I am off the trial.

Its so strange because I've never had adverse reactions to any drugs before. :thumbdn::mad1:

[Donnak06]

I did start off on a low dose 500mg per day, then upped it to 500mg twice a day and I am now on 500mg three times a day which is still quite a low dose but I will be staying on this. Did they start you on a low dose and then increase it?

[Geoff]

Hi Sam, sorry to read you are ging through the mill at present. It was a long time ago, i.e 7 years when after DX i was put onto MMF/cellcept. I was able to return to work and dont recall any serious side effects but like Pete, I did eventually flare. You know how many different drugs/treatment I have had since!

I know the team at Adds will get you back on track soon, best wishes and maybe see you there! (Friday May 29th for me)

[gilders]

This means I a back to Addenbrookes next week who will either start me back on the Mycophenolate at a low dose, try me on something else or its back to the RTX but that will mean I am off the trial.



Hi Sam,
I know one of the reasons you wanted to be on the trial was to help future Weggies, but you need to put yourself first. So if RTX is the best thing for you, then you must take it.