Posted 25 April 2009 - 09:34 AM
My name is Iulian Muntean. I am new to this forum.
MY father was diagnosed with sclerosis sine scleroderma; severe Raynaud's Syndrome; pulmonary fibrosis. I see him geting worse day by day. He have difficultly breathing, coughs a lot, and faints due to lack of oxygen.
Is anyone having these symptoms?? I would like to know if there is a treatment to slow down the progress of pulmonary fibrosis? If there is a new drug available?
Bless you all.
Posted 25 April 2009 - 10:53 AM
Welcome to the Forum. I am sorry your father has been diagnosed with scleroderma. I hope we can provide you with reliable information, support, and understanding friendship.
I also have systemic sclerosis sine scleroderma, Raynaud's, and pulmonary fibrosis, plus pulmonary hypertension.
What the doctors have done for me (for pulmonary fibrosis) is to put me on a medication that is an immune system suppressant. There are many drugs that act this way and much research is being done. I also use supplemental oxygen. Additionally, I have an exercise program to keep my large muscle groups (arms and legs) in good condition so that they use oxygen more efficiently.
We have a section of information on pulmonary fibrosis where you can read about current methods of treatment for pulmonary fibrosis and research.
Does your father see a scleroderma expert? We have a listing of European scleroderma experts that might be helpful to you.
Please will you let us know how your father is doing? I hope you will post to the Forum often. I send best wishes to you both.
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
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International Scleroderma Network
Posted 25 April 2009 - 08:44 PM
I have nothing to add to what Jeannie said, but I wanted to welcome you.
You have found a wonderful forum, with caring and knowledgeable people.
There are medicines that can help your dad. The most important thing you all can do is find a good doctor, preferably a scleroderma specialist.
Best wishes to you.
Mary in Texas
Posted 26 April 2009 - 07:49 AM
Yes my father is treated by a doctor that is on the list you gave me so this means he is in good hands.
I see that he is on the similar treatment, I wanted to know if there is another sclero specialist saying something else to tackle the disease.
So the only thing I can do is put my faith in the doctor and hope for the best.
Thank you again for your help on behalf of me and my father.
Thank you for your warm welcome from the bottom of my heart.
My father is treated by a sclero specialist so he is in good hands.
Best wishes to you, too.
Posted 27 April 2009 - 09:56 AM
I'm glad to hear that our faher is in good hands. We are thinking of you and wishing you and your dad the best! I hope he is soon feeling better!
Mary in Texas