I have an autoimmune-related pulmonary fibrosis (dermatomyositis) and am currently on Cellcept and Prednisone. I saw my pulmonologist yesterday and he said he thinks within the next six months Ofev will be approved for ALL forms of PF that are progressing. He thinks I should add the Ofev when it’s available to me. I was on Ofev for five weeks…[Read more]
That’s great. I wish you the best, and that’s terrific that you’ll have a place to stay. I went to Women & Brigham for an initial lung transplant consult and left feeling pretty anxious about the whole thing. Soon after that my diagnosis changed to autoimmune and my pulmonologist thinks there’s a good chance we can get the fibrosis into remission.…[Read more]
Thanks. I was on Ofev for a month before my diagnosis changed to autoimmune. I didn’t have any serious side effects, although my appetite and sense of taste seemed off. I think if I’m offered both I’ll do it.
Now that Ofev has received approval for several forms of autoimmune-related pulmonary fibrosis, many patients are starting to take it in addition to the mycophenolate (Cellcept) they had already been taking. My pulmonologist thinks Ofev will be available to me relatively soon. I’m a little concerned about taking two such strong drugs, but the…[Read more]
Last winter my hands, especially around the thumb and index finger, got very red and cracked. It was quite painful. I thought it was the dry winter air and tried treating it with hand creams and mositurizers. A biopsy showed it positive for connective tissue and it’s what they call “mechanic’s hands.” Some 70 percent of people with this rash get…[Read more]
I do worry about that and wash my hands a lot. I also carry wipes around with me to clean surfaces. And I don’t greet people with hugs or hand shakes anymore. I stay away from hospitals and schools. I’m up to date with all my vaccines. But my doctor tells me not to let it make me crazy.
I’m also 72 and was diagnosed last spring with pulmonary fibrosis. At first they called it IPD (idiopathic pulmonary fibrosis) but later determined it was caused by autoimmune disorders. I started at 1,000 mg cellcept a day and am now at 3,000 mg. I’ve been on it for almost three months, which is how long it takes to start working. I’ve also been…[Read more]
Also, I live in RI too, and go to a support group the the third Thursday of the month in East Providence. Let me know if you’re interested in that. There are people there who are also pursuing transplants.
Hi Pamela. I assume you’ve looked into Brigham and Women’s in Boston. I’ll be 72 next month and am considering starting the process at either B&W or Mass General. Did they put you through a lot of tests before telling you you weren’t eligible? That’s what I’m dreading. Can I ask what they decided made you ineligible? Only if you’re comfortable…[Read more]
Have a wonderful trip, Charlene. I look forward to hearing how you handle any challenges you encounter. I haven’t traveled since getting my diagnosis and supplementary oxygen, so I’m particularly interested in how others do it.
This is potentially huge — and good — news for those of us who don’t have IPF. This approval is for those who have Scleroderma, but according to my nurse practitioner other clinical trials are showing equally encouraging results for pulmonary fibrosis caused by other autoimmune disorders. She expects FDA approval will get pushed through…[Read more]
I share your ambivalence about transplantation at my age. I’m going to see how I am after the holidays and make a decision then whether to pursue that option. I’m not sure I’d even be eligible. Right now I’m hoping the drugs I’m on will stabilize this disease. Mine is autoimmune-related and my doctor says sometimes the CellCept is able to put it…[Read more]
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