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What Are You Taking

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Just wondering what everyone who has lung issues are taking for it, and has it helped at all. Do you also need to be on this med for the rest of your life or is it short term?. Can this med eventually not work. Also what is the prognosis for Scleroderma patients that have lung issues, I was diagnosed only 5 months ago with Limited/Crest and everything is internal at the moment.

Sorry for all the questions.

I am due to see my rheumatologist on Monday to get chest x-ray results for the increased pain I am getting in my lungs when breathing , especially in the evening. I am also having a PFT done on wednesday , I have a feeling he wants to put me on prednisolone which I don't want, as last time I had severe kidney pains after only being on a short course.

 

Thanks everyone for being a great support!

 

Best wishes

Celia :o

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Celia,

 

Sorry to hear about your problems.

I started on 3000 mg Cellcept in December 2005, stayed on the dose till my lungs stabilized. I am on reduced dose of 2000 mg since June 2007. I have taken small doses (20 mg) Prednisone couple of times for less than 10 days at a time. At one time I had difficulty in walking even few minutes, but I slowly continue to stretch myself. It has been slow improvement over two years, but I think at this point I do see improvements in my lung function:

Predicated Observed % Pred

FVC Liters 4.06 2.82 70

FEV1 Liters 3.31 2.47 75

FEV1/FVC % 81 87 108

 

I am not expert at interpreting data, but I was told FVC 70% of predicated is mild effect and FEV1/FVC over 100% is good. May be someone can provide little bit more insight how to interpret these results.

 

I also do some breathing exercises and formed habit of taking deep breath while I am driving or sitting idle.


Kind regards,

 

Kamlesh

 

 

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Celia,

I'm taking Bosentan for pulmonary arterial hypertension and cellcept as my immunosuppresant with hopes that it helps stabilize the pulmonary fibrosis. Both seem to be helping based on test results. In fact, the Bosentan dosage was cut in half a couple of months ago due to a drop in PA pressure. Yes - you can plateau on a medication. When I plateaued on methotrexate we started a new treatment.

 

Since you do suffer from kidney pain, please have a long discussion with your doctor about the use of prednisone. Let us know how things go and you test results. Good thoughts being sent your way.

 

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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