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Cynthia

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@cynthia-comery-ferguson

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    Cynthia replied to the topic Hypersensitivity pneumonitis /Cellcept question in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 years ago

    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]

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    Cynthia replied to the topic Lung Transplant Considerations. in the forum Pre/Post Lung Transplant 3 years, 2 months ago

    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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    Cynthia replied to the topic Friend Requests in the forum Using Our Forums 3 years, 4 months ago

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

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    Cynthia replied to the topic Is it time to give up Christmas? in the forum Living with Pulmonary Fibrosis: 50+ 3 years, 4 months ago

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

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    Cynthia replied to the topic Do you take OFEV? Take our poll! in the forum Polls & Quizzes 3 years, 6 months ago

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

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    Cynthia replied to the topic Do you take OFEV? Take our poll! in the forum Polls & Quizzes 3 years, 6 months ago

    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]

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    Cynthia posted a new activity comment 3 years, 6 months ago

    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]

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    Cynthia replied to the topic Taking Cellcept (mycophenolate) PLUS Ofev in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 6 months ago

    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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    Cynthia started the topic Taking Cellcept (mycophenolate) PLUS Ofev in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 6 months ago

    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]

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    Cynthia replied to the topic Use of Prednisone and Cellcept to Treat PF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 years, 6 months ago

    @caneelbay1

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

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    Cynthia replied to the topic Use of Prednisone and Cellcept to Treat PF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 years, 6 months ago

    They believe it’s dermatomyositis and Raynaud’s.

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    Cynthia replied to the topic Use of Prednisone and Cellcept to Treat PF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 years, 6 months ago

    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]

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    Cynthia replied to the topic Use of Prednisone and Cellcept to Treat PF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 years, 6 months ago

    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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    Cynthia replied to the topic Use of Prednisone and Cellcept to Treat PF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 years, 6 months ago

    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]

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    Cynthia replied to the topic Nobel Prize Winners Hoping to Improve Lung Transplant Outcomes in the forum Clinical Trials 3 years, 7 months ago

    That IS exciting. Thanks for sharing that.

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    Cynthia replied to the topic Comparing Lung Transplant Centers in the forum Pre/Post Lung Transplant 3 years, 7 months ago

    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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    Cynthia replied to the topic Comparing Lung Transplant Centers in the forum Pre/Post Lung Transplant 3 years, 7 months ago

    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]

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    Cynthia replied to the topic Aloha from Hawaii in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 8 months ago

    It looks gorgeous. Have a wonderful trip.

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    Cynthia replied to the topic Your Personal Travel Tips For Patients with PF in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 years, 8 months ago

    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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    Cynthia started the topic Ofev approved for an ILD other than IPF in the forum Ofev (Nintedanib) 3 years, 8 months ago

    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]

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