Hi everyone, I have a question to ask. Does anyone have sceleroderma and PAH and if so are you on oxygen? I'm curious because i have this.

[overcomer]

[Hidden]

Hi, This is one thing i am worried about. I have Scleroderma, and my lung function tests are declining slowly, also having difficulty exercising in the same way. What happened with you, i,d be interested in how you found out? Sorry to hear you have to have oxygen.

[overcomer]

Thanks so much for responding. This is how things started with me, I would be so tired i had no energy at all, then all of a sudden i could'nt get up the stairs without getting out of breath. I felt so bad i went to emergency room they ran a lot of test and discovered my oxygen level was low and they did the test for pah and it showed my lungs were affected also. I could hardly believe it at first but I know that I have to just know that I'm going to be alright. i would suggest you get with a good pulmonary dr so they can treat you asap. You see I did'nt know about this, but as i look back i've been getting tired for a while. I hope this helps you, and i hope you feel better. Also I did'nt want to go on oxygen but i'm thankful for it because i feel much better now.

[Hidden]

Sorry to hear that. I think Scleroderma has a lot of hidden aspects that only show when it gets really bad. I expect we all put up with more than we should until there's an emergency. Take Care and hope things remain stable for you.

[overcomer]

Thanks so much, you are so right we do put up with a lot I guess I thought the shortness of breath would go away, but it got worst and I had to get to the emergency room. But I thank God I'm feeling much better. You take care of yourself also. I really do thank you for taking time out of your day to respond.

[dawgjones]

I have PAH and scleroderma. When I was diagnosed with scleroderma, I was at the high end of normal in my pulmonary arteries. Less than a year later, my pulmonologist had a right sided heart cath done and my pressure was high. I was already on oxygen as my O-sat level would go in the 80's with just a short walk. My doctor put me on Traclear first, then about three months later, he put me on revatio. I just had a 2D Echo done and it has shown my pressure has increased. The next step is a drug delivered by a pump. I see my pulmonologist today to get things started. I hope this helps.

[overcomer in reply to dawgjones]

Yes, this does help. I was thinking no one else was experiencing this. I've had the right side cath done also, I've been on oxygen since October of 2011 I'm on Adcirca and Letaris,I can move around better since i've been on these medications. My pulmonologist said my 6 minute walks are improving, but when they remove the oxygen my stats decrease to 88 so I have to keep using the oxygen. I thank you for answering I've heard about the pump an I've read about one young lady who is on this treatment and she's doing much better. I hope this works well for you. Keep fighting and don't give up. We are going to make it.

[dawgjones in reply to overcomer]

My doctor did not put me on the pump, but Tyvaso which is the same drug as the pump, but inhaled instead. It depends on getting the insurance coverage which should be no problem. I did have a question. Do you know what your pulmonary pressure is and what is your oxygen intake amount? I am now taking in 3.5 to 4 liters of Oxygen per minute. It depends on my level of activity. I don't know what my pulmonary pressure is. The last number I was given was 55.

[overcomer]

I'm sorry, I don't know what my pulmonary pressure is but I do have to go back to the dr in a couple of weeks and i will let you know. my oxygen intake amount is 2 to 3 liters also it depends on my level of activity. I'm sure there will be no problem with you Insurance approval as long as you need the meds the Insurance companies usually approves it. Take care and let me know how the new medicine works.