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JG07

Breathing problems

6 posts in this topic

Has anyone heard that scleroderma can effect the muscles arteries and veins leading to and around the lungs - I was told yesterday that this may be the case - My breathing is labored at all times and the fatigue is worse. I take 1000 mg of cellcept a day - going back to the pulm @ the cleveland clinic in Weston Florida on Thursday - any advice

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Hi JG07,  About a year and a half ago my breathing was terrible.  I couldn't walk the stairs to our home without bending over and trying to catch my breath.  My doctor put me on Cellcept for a period of time and my breathing did not improve.  He then made the decision to put me into the SCOT study and I've received 12 infusions of Cytoxin. My breathing as well as skin score and other symptoms are much, much better today. Maybe Cellcept isn't the right treatment for you. Good Luck, Birdman


Hugs for All,

 

Julie (Bird Lady)

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Hi, JG07

 

Please make sure to ask these questions of your pulmonologist tomorrow. I don't have any personal experience with lung issues, but a number of people on the forums are taking Cellcept at higher doses than yours. So much is dependent on your own circumstances, though, so you should work this out with your doctors. Are you seeing a scleroderma specialist?


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi. I am not any expert but it sounds like you are saying you have pulmonary hypertension. I have sclero and I have ILD - interstitial lung disease. My course of treatment was 6 months of IV cyclophosphamide at a dosage based on my weight followed by an immunsuppressent ie. Cellcept, etc.. I live in FL and go the Mayo Clinic in jacksonville. The Mayo clinic is fantastic. People there are pleasant and competitant and the place is spotless. I see a rheumatologist and pulmonologist there. The Pulmonologist specializes in ILD and trained at Univ. of Pittsburgh with doctors. Medsger and Steen, both sclero super-doctors. So he is well versed in ILD and sclero. PM me and I will give you his name if you are interested. My rheumatologist at the Mayo clinic is great too although he plays a secondary role in my care as it is directed by doctors. up north but he is very good and makes a good sounding board and honest second opinion for me. He is well versed as well in sclero. Good Luck. Gidget

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Well I hope I come back with some answers - I would like to feel like I am getting something accomplished after all these visits .

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Went to Cleveland Clinic - have to have nerve study & SNIFF Test ? which is for diapram - Diag. vasulitis & polymos. All this time thinking it was PH - - I was told the way it has effected me is rare - I wouldn't have it any other way ! Continue on cellcept and wait til all new blood work and studies are complete -

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