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Cellcept: When does it start to help?

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Ok so I have been on this medication for almost 5 weeks now and I do not feel any better. Am I just being too quick? As a matter of fact I feel worse, the skin on my neck feels tighter than ever. My lungs still ache. I just recently started on the 2000 mg dose and am hoping that the increase will help stop these symptoms since I did not have neck tightening before. I also still don't feel like I can truely get a deep breath I know it is from the Pulmonary Fibrosis but I was hoping that I would get a little relief. How fast did it work for everyone else?

Thank you,

-Anderson

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Hi Anderson,

When I was diagnosed with Scleroderma in March 2004, I was in such a bad shape at all fronts. I had no energy, my lung capacity was pretty low, severe acid reflux, high fever above 102 degrees every 4-6 weeks. Cellcept was real life saver for me. I started 1500 mg and increased to 3000 mg within few weeks. It took 12-18 months to see full benefits and started to reduce dose slowly to 1500 mg. I had to stop completely over a year ago due White Blood Count (WBC) staying very low. I am glad I stopped it and I do not need to take it any more.

 

Glad to see Cellcept forced my scleroderma in remission!


Kind regards,

 

Kamlesh

 

 

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Anderson,

Unfortunately, as Kamlesh mentioned, it could take months before seeing or feeling any results. There have been several successful studies on cellcept and pulmonary fibrosis, but I couldn't find any on cellcept and skin fibrosis. That may be because it's never been tested specifically for that.

 

I've been on cellcept for 2 years. Like Kamlesh, I started at 1500 g/day and after 4 weeks was at maximum dosage of 3 g/day. I'm still at that level. Within 6 months I did started seeing improvements in my breathing and stamina. My pulmonary functions tests were stable after 6 months and the audible crackling noise in my lower lobe (where my fibrosis is concentrated) had decreased. Now my doctors say they have to really concentrate to even hear it. So I give it an "A" for my case. I don't have skin involvement, so I can't help you there.

 

This should also be a question for your doctor. If the cellcept isn't helping you with your fatigue or skin tightening, you need to mention that. Maybe once you get to the higher dose, you'll see some difference. I hope so. Please let us know.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hello Anderson

 

I was told that it took approx 3 months before cellcept started to work and something certainly help my skin and it can't have been anything else.

 

That your skin is still tightening shows your disease is very active and the cellcept may not have kicked in yet. I would have thought it unlikely that cellcept would make your skin worse.

 

Speak to your doctor for confirmation and hang in there.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Sorry for the rookie question but what is cellcept?

My doctors have not mentioned this medication.

Stem cell transplant and cytoxan but not cellcept.

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Hi Walt,

 

No such thing as a rookie question!

 

CellCept is a brand name for mycophenolate mofetil, an immune system suppressant. (And now you know why everybody just calls it CellCept! :lol: )

 

A lot of us have been on it at some point or another and like everything else, the results have been mixed. In my case, that was the first thing they tried and I've stabilized very nicely on it.

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Anderson, I started taking Cellcept in Sept 2008. At a follow-up appt 10 weeks later I told the rheumatologist that it didn't seem to be having any effect and that my skin was still getting tighter. He told me that I had to give it time-that it takes 3 months or more to show an effect. In January this year I had to discontinue taking it (GI haemorrhage) but at my follow-up last week the doctors said that my skin score was better than it had been in September and felt that even though I had stayed just 4 months on the Cellcept, it had caused some improvement. So hang in there- hopefully the Cellcept will start to kick in soon.

 

Lizzie

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