cynthia-comery-ferguson
Forum Replies Created
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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 down to 5 mg Prednisone in the past month and I’m wondering if it might be that. Or possibly it’s all the pollen in the air. Does anyone have more trouble breathing during this season? I was going to get a CT scan and breathing test in June but my pulmonologist has moved them up to Monday. I’m nervous about getting them done in the middle of this pandemic, but I really am anxious to see if there’s been any decline. If there is, I want to talk with him about Retuxin infusions, which many have felt made a huge difference. My rheumatologist is nervous about doing those during the pandemic because they will further suppress my immune system. In answer to the original question about Cellcept, my doctor said it takes three months to kick in.
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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.
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Thanks Mark. I got a friend request from Johnson too.
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Charlene, I’m sorry to hear you’re still feeling sick. Hope you’re on the mend soon.
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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 before they changed my diagnosis to autoimmune and I didn’t suffer terrible side effects. I did lose my appetite and my taste buds seemed off, which I didn’t like, but I think I’ll go back on it as soon as I can.
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That IS exciting. Thanks for sharing that.
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It looks gorgeous. Have a wonderful trip.
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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.
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Mark, thanks so much for letting us know about this webinar series. I just listened to the June “Ask a Doc.” It’s excellent.
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I find I freak out a little when I have bad days. I’m scared to death the disease is progressing. I’m still relatively new to this (I was just diagnosed in May) so I’m not quite sure how I’m supposed to feel. My doctor just doubled my Cellcept on Friday so maybe the fact that I’m not feeling great today is due to that. I don’t know how to describe what I feel other than I’m acutely aware of my chest and I feel slightly SOB even when I’m sitting or lying down. And I have no energy.
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I think it takes at least two months for Ofev to start working.
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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.
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@caneelbay1
Your doctor didn’t suggest Cellcept? It’s pretty effective in treating autoimmune-related pulmonary fibrosis.
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They believe it’s dermatomyositis and Raynaud’s.
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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 interstitial lung disease. I also had a rash that looked like eczema that ran from my hands to my elbows. The skin rashes have pretty much disappeared since I’ve been on the cellcept and steroid, but I do have some cracking on the palm of one of my hands.
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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.
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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 on a steroid (prednisone) but am tapering down. I’m starting to seeing some improvement, and my doctor is hoping we can keep it stable for a while. Yes, she can (and should) get a flu shot unless her doctors tell her there’s a particular reason she shouldn’t.
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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.
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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 discussing it. I know centers that do bigger numbers take more “at risk” patients (like Cleveland), but I don’t know how I move to a city where I don’t friends and family.
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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 in remission.
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Thanks for sharing that, Annette. The unpredictability of this disease scares me to death too. Did you ever look into transplantation? Can you tell me a little more about your current condition. Are you on a lot of oxygen? Are you able to care for yourself and do some socializing? I’m curious why your doctor thought you were ready for palliative care right now, although I have seen people on this site say that it shouldn’t be confused with hospice. Perhaps the palliative providers can recommend meds for anxiety and stress as well as pain.
Do stay engaged in this forum. I know it makes me feel less isolated participating in it.
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It’s possible you might feel better after starting the immune suppressive drugs if you have inflammation. I just started prednisone and CellCept two weeks ago and my pulmonologist is hopeful that some of what he sees in my lungs is in fact inflammation, which can be eradicated. The scarring, of course, is irreversible, but hopefully the drugs will slow down the progression of that. I think you said you have hypersensitivity pneumonitis. I believe that usually involves inflammation.
I do hope I have some time where I feel better than I do now. Right now I always feel like I’m coming down with a bad chest cold. But, like others, I look fine and so friends kind of expect me to do more than I’m capable of right now.
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I’m surprised your doctor waited so long to put you on oxygen. It sounds like you might have needed it earlier. I was put on oxygen (2L) for exertion and sleep right after the diagnosis in May. I can definitely feel the difference. Even walking around a supermarket makes me dizzy and tired if I don’t use it.
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I’m on 1000 mg 2x a day of Cellcept and 40 mg of Prednisone. One or both of them are giving me terrible insomnia. I do feel tired during the day.