Pros And Cons Of Cellcept

[beeinformed]

Hi,

My rheumatologist wants me to take a low dose (250 mg.) of the generic version of cellcept because my hearing is getting worse and I can't seem to get below 12 mg. of medrol (equvilant to 15 mg. of prednisone), without my symptoms worsening. I saw my ent doctor a few days ago and had a hearing test which showed a worsening of my hearing in my left ear. The ent doc concurs with the rheumatologist that I should stay on 10 mg. (the dose I am currently on) of medrol and take the cellcept medication.

I am leery of taking cellcept and would appreciate of any feedback/responses from those who have taken it. Thanks! :smile1:

[crackers]

back in july 2007 i was put on cellcept but started on 3 grams a day plus 60 mgs of pred.in august that year i spent a month in hospital due to pneumonia and septicemia,i later found out that this was because i had been started on too high a dose of cellcept.in 2009 i restarted taking cellcept but only 500 mg a day.presently i'm on 2 grams of cellcept but only on 5mgs of pred.i have had no problems at all as regards side effects and will be coming off the pred in the near future. cellcept, overall, has been good for me i hope it is good for you too.
john.

[beeinformed]

back in july 2007 i was put on cellcept but started on 3 grams a day plus 60 mgs of pred.in august that year i spent a month in hospital due to pneumonia and septicemia,i later found out that this was because i had been started on too high a dose of cellcept.in 2009 i restarted taking cellcept but only 500 mg a day.presently i'm on 2 grams of cellcept but only on 5mgs of pred.i have had no problems at all as regards side effects and will be coming off the pred in the near future. cellcept, overall, has been good for me i hope it is good for you too.
john.

Thanks John for your reply to my question regarding your experience with cellcept and I hope others will chime in on their experiences with taking cellcept, as I like to find out how beneficial it has been for them and/or if anyone has experienced side effects that were not too pleasant.

[Natalie]

I have been on cell cept for alot of years now , I started on them after a big bout of cyclophosamide , I think My dose back then was 1000mg daily and a pretty high dose of pred , Im now on 3000mg Daily cell cept and 5mg Pred . never had any side affects from it . good luck with your ear issues , I had really bad ears , they did just seem to get better over time , maybe the cell cept helped ?

[beeinformed]

I have been on cell cept for alot of years now , I started on them after a big bout of cyclophosamide , I think My dose back then was 1000mg daily and a pretty high dose of pred , Im now on 3000mg Daily cell cept and 5mg Pred . never had any side affects from it . good luck with your ear issues , I had really bad ears , they did just seem to get better over time , maybe the cell cept helped ?

Hi Natalie,

Thank you so much for your response to my questions about cellcept and how it might have helped improved your hearing. I am feeling a little intrepid about taking Cellcept and I know it is a low dose but I am still uneasy about it , however, I am encouraged to hear that your hearing is better, while taking cellcept.

I really appreciate your response as I am in a funk right now and any words of encouragement you can give me regarding taking cellcept to perhaps increase my hearing/and or stabilize it , is greatly appreciated! Thanks! :smile1:

[drz]

Some people have regained their hearing or had some improvement as the under lying GPA was treated with one of the immunosuppressant drugs so I would pursue if but it doesn't always help as some times the damage may be permanent. I tried cortisone injections into ear drum but they didn't help much. The loss of hearing from blocked Eustachian tube seemed to improve a little as I moved into drug induced remission but I had to have a osseo-integrated hearing implant (BAHA) to restore part of my hearing on the side where I lost all my hearing. I find hearing a big factor in my ability to enjoy things and would push the doctors to try anything that might help improve your hearing.

[Natalie]

Yes I would too Push your doc , hearing loss was one of the hardest obstacle I had to over come. Keep at your Doctors Beeinformed its all about Quality of life we all deserved the best

[Solette]

Hi Beeinformed,

My husband was on the generic version of Cellcept after being on Cellcept for about a year (our medical aid would only pay for the generic). We immediately picked up that the generic is not as effective as the original. His infection count almost doubled in one month and after about three months of taking the generic and a huge fight with our medical aid, he was put back on Cellcept and within a month his infection count came down to where it was before. He is currently taking 2grams in the morning and 2grams at night with 5mg prednisone per day. He has experienced some good days and bad days, but overall, I do think that the Cellcept is really helping him.

Please be careful with the generic version. It is not as effective as the originall.

Good luck.
Solette

[Rose]

I have been on Cellcept 1.5g daily for years now and have been doing well on it. I had a lot of hearing problems when first diagnosed but the cyclophosphamide and high dose prednisone took care of that and my hearing today is within normal range for my age Cellcept was prescribed to keep me in chemical remission and to date it has worked with the exception of a few minor flares. Started off with the Brand one but insurance would not cover all cost (large co-pay) so started on the Generic in Octoberr 2010. The plan was that if my condition worsened and the generic was not obviously as effective as the brand, we would have ammunition ti fight the insurance company, As it happened...well nothing happened, I continued to be controlled on the generic cellcept and still take it to this day. I say THE generic when I should say A generic as I believe there are a few out there and not all to the same quality.. I take the one made by Sandoz......Mycophenolate-Hexal. I also take 5mg Prednisone daily.

[Rose]

Hi Beeinformed,

My husband was on the generic version of Cellcept after being on Cellcept for about a year (our medical aid would only pay for the generic). We immediately picked up that the generic is not as effective as the original. His infection count almost doubled in one month and after about three months of taking the generic and a huge fight with our medical aid, he was put back on Cellcept and within a month his infection count came down to where it was before. He is currently taking 2grams in the morning and 2grams at night with 5mg prednisone per day. He has experienced some good days and bad days, but overall, I do think that the Cellcept is really helping him.

Please be careful with the generic version. It is not as effective as the originall.

Good luck.
Solette

Solette, I see you are from SA. I am from Johannesburg. As I mentioned on the previous post, I have had no problem with the generic. I have been told that it is only the Sandoz generic that is available in South Africa. Out of interest sake, was that the one your husband was on?

[Solette]

Hi Rose, my husband was also on the Sandoz.generic version. I am glad that the generic is working for you, as my husband really struggled. I am glad to hear that you are in remission. My husband had a minor flare about a month and a half back, but is now back in remission. Best of luck to you and your family.Solette

[ArlaMo]

I have been on Cellcept since January, following rtx infusions that induced remission. Unfortunately, I'm flaring and was just seen yesterday by Dr. Koening at the U of Utah Vasculitis Center. He was talking to me about Cellcept and the latest studies are showing that it has an inferior performance when compared to methotrexate or azathioprine as a maintenance drug. I've read a couple articles in the last few weeks that indicated the same.

[RCOSSIO]

I have been on Cellcept for 4 years and have found it beneficial. I do agree with others in the forum that the Roche Brand is better than some generics. In fact, my Rheumy had a patient that was not responding to 4 different generics and find one that she responded too. He is leary on the generic brand of mycophenolate as the formula is the same as per FDA, but how they encapsulate and what other ingredients they use differ from each other. Try to have you doc prescribe Roche Brand Cellcept for a year and see what transpire.

[beeinformed]

The generic version of Cellcept that I take is made by "Teva". Is anyone familiar with this generic version of CellCept? I saw my Rheumatologist two days ago and he increased the Cellcept from 250 mg. to 500 mg, so I will be taking a total of 500 mg. a day. I hope I don't have any problems with this generic version of Cellcept as my hearing loss is mostly stable and I would like it to remain so.