Cynthia

Hi Charlene. I’m on Cellcept but my diagnosis isn’t HP. It’s PF caused by an autoimmune disorder — dermatomyositis. I started the Cellcept (I’m now at 3,000 mg) and Prednisone last fall and saw some improvement in oxygen levels and breathing tests after about four months. In the past week, however, I noticed a drop in my O2 levels. I’ve tapered…[Read more]

Good luck, Robert. Sounds like you have a great support system there and MGH is first rate. (My pulmonologist came from there last year, and I think the world of him.) Keep us posted.

Thanks Mark. I got a friend request from Johnson too.

Charlene, I’m sorry to hear you’re still feeling sick. Hope you’re on the mend soon.

I think it takes at least two months for Ofev to start working.

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]

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.

@caneelbay1

Your doctor didn’t suggest Cellcept? It’s pretty effective in treating autoimmune-related pulmonary fibrosis.

They believe it’s dermatomyositis and Raynaud’s.

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]

That IS exciting. Thanks for sharing that.

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]

It looks gorgeous. Have a wonderful trip.

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.