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Question About Immunosuppresants For Fibrosis

26 posts in this topic

Finally getting back to your responses. Sorry it took so long.

Sherrill - I don't feel the short fibs, but "at times" I do know that I'm in A fib with the longers one. As you know I already cough a lot, but when the cough become uncontrollable, it usually indicates a fib. I have discovered that oxygen can "usually" stop it. If the fib is a really high heart rate that can't be controlled by pacer, I get a strong pulsing in my neck and pounding chest. My pacer is not a defibrillator so it can't always stop the fibs.


Mike - my research is increasing on the stem cells and finding more about my eligibility. I haven't explored monoclonal antibody therapy, so thanks for mentioning it. I'll take a look.


Megan, You're right, with all the meds and stuff we're going through it's hard to know what does what. I'm glad your lungs are stable. Wish you knew for sure what to attribute it to. I haven't had a chance yet to talk to the pulmonary doctor about these treatments, but I see her on Wed. Right now I am leaning toward the IV cytoxan because of my recent experience with the oral. I'm getting my IVIg treatments this week so I hope they reduce some of the fatigue that I'm experiencing for not being on an immunosuppresant. We'll see in a week


Thanks again to everyone for your valuable feedback.


Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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