Has anyone tried CellCept?

Hello

I was diagnosed with ITP in Feb and have been on Prednisolone since. I have never been put on a very high dose but whenever we tried to wean off my platelets drop. Doc wants me to have a splenectomy but as its still early days in a bit reluctant to go down that route. so i'm going to be trying out Cellcept. I just wondered if anyone had tried it and had any success/failure and how they felt while taking it? Pred makes me feel so awful that im scared i'll feel even worse on the CellCept as i imagine its much stronger.

Thank you for any replies.

Hello Nrai

I am currently taking CellCept at a dose of 2 times 1 gram a day. I was diagnosed in May 2011 and given 60 mg of prednisolone per day for 2 weeks with no response (count of 8 to 10),the steroid dose was reduced to 30mg per day and I was given IVIg over 2 days as an outpatient. Counts went up to about 240 in 4 days but went down quickly. Then I was started on the CellCept at 2 times 250mg a day which was increased over the next 6weeks to the dose I am on now while the pred was tappered very slowly and fininshed about 2 months ago. The CellCept was VERY slow to kick in but my counts never went below 26 and are now at 126. Now we are going to reduce the dosage and I would settle for a count of 60 to 70,but who knows what will happen in this itp journey. Like many ,or most others, I had awful effects from the Predisolone but so far only a few digestive system effects at he start of the CellCept.It is of course a powerful immuno-suppressant, more so than the pred, but keep regularly monitored,use sun screen. Other people on this site and the ITP Association site in the UK have experience with CellCept.Good Luck we are all on a learning curve with itp and it's natural to be scared Look up as much as you can about the current treatments used for itp.You did not mention what your count is?

I took CellCept for just over a year. It worked while I was on it but coming off it saw my counts gradually fall. I did have side effects of nausea and joint pains. When we realised the joint pains were a side effect and not lupus or sjogrens or something else, I came off it. I thought it was worth a try though all the same.

I tried CellCept for Lupus a few years ago. The side effects are nothing like Prednisone. I thought Prednisone was much worse. I stopped CellCept though because it made me feel really brain-fogged and I couldn't function at work. A lot of people do fine with few side effects, so maybe you will do okay.

hiya
thanks for your reply. thats good to hear about teh cellcept. im hoping it helps when i start it. My counts seem to be all over the place at the mo. It went from 88 to 40 in a week when we tried tapering off the prednisolone by 1mg. im not on a very high dose of prednisolone.im only on 15mg a day. after seeing the doses your all on it seems so low.how long did it take for the cellcept to kick in? im hoping it does the tgrick for me as well. its just the thought of taking it is scary as it is a very strong drug and with no immune system im worried that i'll just be ill all the time but then i think of how im feeling on the prednisolone and figure it cant be as bad as this! its all a matter of trial and error i guess. there must be something out there that works for each individual. thanks for taking the time to reply.

Hey Nrai,

I have just been restarted on Cell cept but i was on it for 3-4 years for my UC and AIH before and had no side effects. From what i understand the drug lowers your immune system to a level where it behaves itself. They watch your WBC and make sure it doesn't get too low. I have to say i caught colds only slightly more than a normal person on a dose of 2g daily and about the same as a normal person.

From what i remember it can take Months before Cell Cept can start working

Hi Nrai,

It took the CellCept about 4 months to kick in properly and we were just about to give it up. Each person will respond differently and be prepared for no response, a variable platelet count and even for it to stop working. I have learned not to be concerned about reasonable fluctuations within the overall response. Like Markhudson I caught colds only slighty more than the average person and no Flu. I did have the yearly shot of dead vaccine given sub-cutaneously.Yes I am very contented with CellCept so far and the WBC are monitored regularly.

I took Cellcept for a couple of years. It worked okay while it worked, then it stopped working entirely. I tended to get sick often with colds, viruses, etc while using Cellcept.

Thank you for all your replies. I had my appointmtnt on monday and you can imagine my surprise when my platelet count had shot up to 121!!! even my haemotologist was surprised. We are not sure about what did it but due to these results i am not going to try the cellcept yet. need to have more bloods done in two weeks time then will take it from there. I just wondered if any of you have had any surprises like this. I hadnt taken any more pred than usual and teh only thing i did different was have a couple of Tblspn of papaya leaf extract each day for 3 days before my test. Now i know its not a proper medical treatment and 3 days is way too soon for anyhting to work so im wondering if its just my platelets playing tricks with me? does this happen?i know that platelet counts go up and down but to go from 40 to 121 in a week? does that heppen?

N

Its my understanding that numbers can change that much in a week.

Also, I took CellCept at the same time as cyclosporine and imuran for a good 8 months or so as the paper quoted below found that all three helped some ITP patients. My goal was to get off prednisone- the treatment didn't work, but I suffered from no side effects.

Mark


Combination immunosuppressant therapy for patients with chronic refractory immune thrombocytopenic purpura.
Blood. 2010 Jan 7;115(1):29-31.

Nrai, about platelet drops and rises, on 15 mg of pred/day, I went from 12K to 61K to 223K. Doc then dropped me to 10 mg/day, and my platelets plummeted to 17K. These are weekly numbers. Also a cold was probably partly responsible for the big rise. Earlier this year, while on 3-4 mg pred/day, I went from 82 to 230 to 177 to 21. I never know what to expect.

Nrai, Like you I also live in the UK(NHS Scotland). Last week I was switched from CellCept to the generic form of MMF (Myfenax). Does any one have experience of switching to this generic form? Many thanks, Derek

i tried cellcept it took three months to move things up but now im off it and my platelet count is around 100. there doesnt seem to be any side effects that i am aware of.

ashy there are side effects, you can find some by going to the treatment section here or MedLine Plus - the thing is, just because a side effect is listed doesn't mean everyone will get this or that or all side effects. I'm glad you had none!