When I was first diagnosed with PF (CHF) I was put on massive doses of prednisone (by IV as well as pills) by my first pulmonologist, who thought I had IPF. I gained 25 pounds but got rid of inflammation,

My lung biopsy had been done at Mass General last year and showed UIP pattern as well as indicators for CHF. The pulmonologist at MGH took over my case after 6 months on prednisone and immediately put me on high dose of CellCept (micophenolate mofetil, I think) and started weaning me off the prednisone.

I was happy to get off the prednisone because I had really suffered from "prednisone psychosis" + the weight, but after 6 months on CellCept don't notice any effects at all. Can anyone provide any pros or cons on CellCept? I meet with the MGH Pul. on Aug 6 and would love to feel I'm on some right track. Thanks

Report post

7 replies. Join the discussion

I am on Cellcept at 3000mg for pulmonary fibrosis secondary to scleroderma. It was about six months before I started noticing changes in my breathing. After a couple of years the inflammation stopped and my breathing has stabilized.

I cannot talk about your specific fibrosis but most of what I have read on this site is the same time frame for scleroderma patients.

Report post

nonsense: if you go thru the discussions you will see the doctors rx's are all over the place. When I first got diagnosed Jan 2010 I was put on immuran & prednisone, A few months after my next doctor changed immuran to cellcept & a year later I go off the Cellcept & reduced my prednisone to 10mg . There is no FDA approved protocol for PF so the doctors go by experience with patients. The more patients with what we have the more input but since we all react differently there is no consistency to treatment. You have to be your own advocate. Read the discussions here and work up your questions for the doctors and ask the questions. Good luck, hope yours works out..

Report post

Thanks very much. I see I'm being very impatient, will address what the doc thinks my realistic expectations should be.

Report post

My doc said it would take 6- 12 months to know if CellCept was helping. So I had been on it for about 8 months when I got the shingles. Not surprising since CellCept supresses the immune system. The pulmo doc stopped the CellCept and the prophylactic antivirals Azithromyicin and Dapzone (which hadn't prevented the shingles) and started me on Acyclovir. When I had a CT after being off the CellCept for 90 days the results were no change in the amount of fibrosis. So we did not resume CellCept. I am down to 5mg of Prednizone daily and continue the Acyclovir. I don't know if it is because I'm not taking CellCept or because I am taking a single antiviraI but I feel so much better. My O2 needs have not changed, but my stamina has improved. My leg strength has increased with exercise. The pulmo doc told me that CellCept works in a very low percentage of patients with my type of IPF. Because my IPF is attributed to hypersensitivity pneumonitis there may be different reasons for the treatment protocol.

Report post

I am on cellcept (750 mg x2 daily) and 7 mg of prednisone daily. I also take dapsone and azithromycin daily to prevent two kinds of pneumonia. I also take a boat load of other stuff as I am trying to control PF and Sjogrens . My oxygen demands are 6 lpm for exertion and 4 lpm at rest. I think I have tried everything in the book....except cytoxin.
So far this regimen is working well for me. I had to seriously lower my dosage of prednisone to prepare for lung transplant ( I am on the list and waiting). The cellcept has really helped and it is one of the many drugs that is needed for anti rejection after trans plant. I have been battling this disease for 12 years....but now have only one card left to play....lung transplant. I'm so fortunate to live in San Diego near a center of excellence(UCSD) that will do the transplant. Finding, the right "stuff" is hard.....it is a lot of trial and error. It helped me to keep a journal of how I felt when introduced to a new med. Best of luck on your journey...PF is certainly not for wimps so know that you will learn to be strong.
Hugs to you,

Report post

Wow, I had no idea. I was told nothing works, so you don't take meds. Apparently there are things that help. I am still in the beginning? Although I had shortness of breath at least two years before I was diagnosed and even then my first Pul doc didn't tell me what I had even though (I found out later) it was on my chart. I am taking esomeprazole every day, Re: my Pul doc and article on line, "Reflux medicine boosts survival rate in lung disease." But what helps the most is the sleep machine I use.
Lots of Fatique and low blood sugar if I don't eat something every few hours are where I'm at now.
Although obviously my immune system is compromised. I just finished antibiotics and steroids from bronchitis and congested chest, then an endoscopy for H-pylori and more and stronger antibiotics. Previously I hadn't taken any medicine for years, and never even had colds!

So I booked a cruise. My world keeps getting smaller all the time because of low energy. So I figure why wait until I'm worse. We can drive to the Dock and the cruise is to New England and Canada. There's is a Doctor and nurse on board and I'm not on oxygen yet. Yea!
Also Does anyone understand the breathing test results? Or is there a site that would explain it?

Thanks to all for the helpful info. Bless us all.

Report post

I am at Cleveland Clinic right now unable to leave because of high oxygen needs. They are trying to get all the tests done to present me to the board next Monday. Just want to speak up on this conversation because of seeing the medicine Dapsone being mentioned. I have been taking it since Dec as profalactic for systonumonitis pneumonia which they usually give us Bactrim for but I can't take sulf meds So anyway. Dapsone can cause methemoglobinemia which you will have to read about somewhere else because I am too tired to explain it. But it has held them up from giving me my heart catherazation last week which is holding me up at least a whole week from getting listed. So just a heads up. I'll explain more when I get more info.

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

PFF Patient Communication Center

PFF Patient Communication Center - 844.TalkPFF (844.825.5733) toll free - pcc@pulmonaryfibrosis.org

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


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.