CellCept medication

I was diagnosed in Nov. 2011 with IPF. Doctor put me on NAC and 100mg of Azathioprine. I developed rashes around my waist with the Azathioprine, so he cut it down to 50mg. If my white blood cell count drops any further, he will prescribe CellCept.

Has anyone taken this drug and with what results.

Report post

11 replies. Join the discussion

I haven't taken it myself but my mom is on it with few problems and a good friend of mine found it was the only thing that helped his lungs with his schleroderma.

Report post

I have pf related to scleroderma, and and have been on 2500 mg per day cellcept for one year. So far so good. There were some side effects (digestive) for a few months and then everything was ok. It has to be taken on an empty stomach. It is really helping the sclelroderma. The pf remains the same, so who knows, but at least it is not getting worse.

Report post

Aaa art, do some reading about what they call the "cocktail"--a recent large study shows no effect from nac, azithiaprine and cellcept used together--- check the Internet; my Pulmologist just shook his head saying " we all use that and it has no effect"

Do some Internet searches and scope this out...if no effect, why take all those bad side effects?

Bill

Report post

Like janisb above I have PF related to Limited Systemic Scleroderma. I was diagnosed in 2005 and have been on 100 mg daily of Azathioprine the whole time. I was initially on Prednisone for 6 months but was removed from that, and have never been on NAC, Cellcept or other immunosupressants. Since 2005 I have had no change in lung function stats and no apparent progression of PF (Praise the LORD). Up until about 6 months ago there was also no apparent progression of the scleorderma symptoms. However, during the last 6 months I have developed more numerous telangiectasias (red spots on the skin caused by a breakdown of the cell walls of superficial capillaries). My blood pressure has also gradually increased over the last 6 months and I have developed some elevated levels on some of the kidney function blood work. Last week I was started on an angiotensin receptor blocker to lower the blood pressure and prevent kidney damage. My docs suspect that there is now evidence of a recent progression of vascular involvement of scleroderma. My doctor didn't want to make any changes to my Azathioprine at this time. It's been effective in stabalizing my condition for this long. I agree with the philosophy of, " If it ain't broke don't fix it." But it looks like the Azathioprine is no longer stabalizing the progression of Scleroderma. I've been browsing looking for any medical articles comparing the effectiveness of Azathioprine vs Cellcept in stabalizing the progression of PF and Scleroderma. Other than Cellcept being about 4 times more expensive than Azathioprine, there doesn't seem to be much evidence that Cellcept is more effective. I did find one article that indicated a slight statistical difference that Cellcept is more effective. More doctors appear to be prescribing Cellcept than Azathioprine now days. Has anybody in the forum seen any articles out there showing increased effectiveness of Cellcept vs Azathioprine.

Report post

Hi Dayvet,

I'm a little confused about switching to Cellcept. Cellcept is a very powerful immunosupresent. Since my Transplant I have been taking it along with Prograf to keep my White Cells low. If your White Cells are getting low, why switch to something which lowerers it? Maybe there is a good reason.

Take care and God Bless,
Dennis

Report post

Dayvet,
I was diagnosed with IPF for almost 12 years. The first 5 years I was on Imuran and is seemed to work for a while and then stopped. My doctors at Mayo, then put me on Cellcept when very few doctors were prescribing it. (That was because my doctors were involved in cutting edge research and were privy to new info about meds that most doctors did not have.) Anyway, I have been on it for 7 years with little side effects. I have some digestive problems but I can't attribute that to Cellcept as I am taking so many other drugs that cause problems as well...who can tell which is causing what. I have had a small progression in my PF during the last year. But I had a major progression in Pulmonary Hypertension.

Cellcept has worked for me. It used to be VERY expensive when I was first put on it as there were no generics available at the time. The actual cost of 2000 mg a day dose for 30 days was $1200.00. I had to pay $171.00 before generics came out. Now I am paying $15.00 a month but this is my cost and my insurance pays the rest. If you are on medicare, you may be paying a higher rate.

I would not be afraid of taking it as it is designed to keep inflammation down which is one of the reasons PF progresses.. inflammation. By the way, I am NOT taking any other of the drug cocktail that you are talking about. My doctors said that they are not any more effective than cellcept by itself.

Report post

Do not think that Healthwell Foundatio will pay for cellcepg or prednisom of iuran NADA thry wont....spoke eith them today and they will cover it after a transplant....so...if you have a grant you better call and check or you might be embarrassed at the drug store.

Report post

Chevelle,
That is good advice for them to check if they can have it paid for if they are receiving Healthwell Foundation money. I receive money from the Caring Voice Coalition and they are paying for my cellcept. They website is www.caringvoice.org. They have IPF as one of the diseases they help with.

Report post

AlphajJim my app to caring voice is in the mail as of yesterday..they ...on paper...seem much more liberal with payments that Healthwell.Do you know of any other help available for us? Aquadoll was going to email me a few but I never got them

Report post

Chevelle,
I do not know of any other org. that gives money away like Caring Voice or Healthwell. Sorry

Report post

I sure hope I have good luck with Carinv Voice.....Because Health Well has too many restrictions for it to help me very much.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support the Pulmonary Fibrosis Foundation

Help the Pulmonary Fibrosis Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Pulmonary Fibrosis Foundation

Discussion topics

Pulmonary Fibrosis Awareness Day

Pulmonary Fibrosis Awareness Day

PFF Summit 2015

PFF Summit 2015

PFF Care Center Network

Links and Resources from the PFF

Community leaders

Disclaimer

The Pulmonary Fibrosis Foundation (PFF) would like to remind visitors and group members that information found in the PFF Support Community should not be considered a replacement for a consultation with a qualified healthcare professional. Please consult your personal physician regarding any medical information that is shared on this site. Any views or opinions expressed on this site are not necessarily those of the PFF.