Guest guest Posted December 7, 2008 Report Share Posted December 7, 2008 Thank you WIlma for the info. What alternative meds have you done in the past? I'd be willing to try anything for a few months or weeks more if possible. I just can't make any of the docs understand about the PH around here. They treat me like I am stupid for even suggestiong things. They said Viagra and such things would probably open things too much causing all kinds of problems like passing out ect. Well then use an older med like Cardizem or something- Maybe I'm missing something.I am not in NYC- I live close to Albany NY. ABout 3 hrs away from NYC. It would be a hard trip for me to take. I am not on prednisone-can't take steroids either. Gives me chest pain,back pain and wheezing with trouble breathing. The doctor only heard of 1 other patient that this happened to and it turned out to be my brother in law-and I already knew this taking care of him. All the misdiagnosed ideas from his docs and he ended up with only RA on Enbrel for a few years. Now he's off that and doing fine. Steroids caused him ILD-his sat's were in the 70's and he refused o2 ect or any other treatments. He was pretty bad for a while then just stopped taking everything and now he's fine. Talk about a miracle!!!! I pray for everyone here who is experiencing this horrible disease in hopes they will find a miracle for all of us!!! Everyone stay well!!!! FYI- my NICKNAME was cookie- self explanatory-loved cookies when I was a kid and the name stuck! Diane PF,Polymyositis,Raynauds,sjorgrens 2006 PH 2008 Quote Link to comment Share on other sites More sharing options...
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