Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 Debb, My sister has been going through something very similar. She also has SD. She does not have any pronounced breathing difficulty, but she does have involvement of the heart. She experienced pains a couple months ago, assumed it was heartburn, and popped a couple of pepcids. It didn't help and the discomfort worsened. She went to the hospital and was informed that she had had a heart attack. A follow up ECHO showed problems as you described. Her ECHO 6 mos prior showed no problems. She's on meds now for the heart and at least that seems under control, though she has serious problems elsewhere. I don't believe she mentioned PH - I'll have to ask her. This is probably not meant to be encouraging, but I mention it so you'll keep that heartburn in mind and treat it seriously. Jeff ----Original Message Follows---- From: Debbullwinkle@... rheumatic Subject: rheumatic Pulmonary Hypertension Date: Wed, 22 Jan 2003 16:27:26 EST Hi all, need some help here if anyone has any thoughts they would like to share. I was dx with SD in 2001 and have been on the mino, name brand since April 01. My AP Dr has me alternate mino with an every 8 week dose of oral clindy for 10 days. My pulmonary function tests have continued to be ok...in the normal range but my chest fibrosis is increasing. Which is worrisome but not as worrisome as my recent echo results. I have had chest pain and difficulty breathing for a couple weeks. I finally called my local rheumy, she sent me to the heart DR. He had done an echo a yr and half ago and told me I did not have PH. This Dr on Monday did an ekg and told me my heart was fine, he felt the chest pain was a flare and inflammation and I needed to see my rheumy. I called her, she was gone and they sent me to ER. At ER, not one of the DRs knew what to do with me and kept me on the heart monitors and watched me while trying to reach my rheumy and GP..who was on call...Finally at 2:30 in the am..the Er DR came in and told me he could not reach anyone and that he did not know what to do with me...and suggested steriods in my IV to reduce inflammation, after having difficulty breathing for several days..and extreme difficulty the last couple days, I said ok, go for it...Within 6 hrs I started feeling some relief...he sent me home with a 7 day tapered dose of Pred..I do not like Pred but I was unsure what to do and agreed we needed to reduce inflammation.. My Rheumy called Tues am and said that was good my heart was ok and that I seemed to be doing quite well with the connective tissue disease...which I find interesting in view of the fact that I had an echo done on Dec. 12/02 by an independent cardio here in town specifically for the Phen Fen class action suit..The results were mailed to me last night. In it..the report shows what the Cardio found, same as mine..the mitral and aortic valve regurgitation...BUT...this recent ECHO shows Pulmonary Hypertension and tells me to contact my cardio asap if I have chest pain or difficult breathing..which I had had quite severely and went to see my cardio on Monday specifically for.. Here are my questions, the mino has done remarkably well at reducing and eliminating my joint pain, epi scleritis and my ANA has dropped and stayed at 320....but clearly, the mino and every 8 weeks clindy is not stopping either the lung fibrosis or the internal organ involvement, ie...the Pulmonary hypertension...Any suggestions would be most welcome, I have made an appt with my SD Dr in NJ for Feb and will see him...a site on the net did say that if you can get control of the underlying disease you can stop or slow the PH...but no one is trying to control my disease other than my AP DR out of town..here they just shrug...I guess I am unsure if the PH is the result of the Pfen Fen usage back in 1995 or is the result of connective tissue disease? nor does it really matter...but I do know that from my research PH occurs in 25% of Crest SD patients and there is really no good tx for it...so I need some info if any of you out there have any opinions..Thanks, DEBB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 HI all, finally got the letter from my cardio DR...my pressure measures 28, in the lungs but the heart is not enlarged...from sites that some of you have sent me....the sites indicate that 14 is a normal pressure or below...and 25 with exercise...mine was 28 at rest....My cardio DR however, does not CALL the PH until it reaches 35...I have sent the results to my SD DR in NJ and will see him soon...any thoughts are much appreciated...I have had chest pain for the past month...which I am concerned about....but as usual, my DRS here just blow it off...Thanks everyone...Take care, DEBB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 Hi Debbie; I was under the impression that you were doing very well with AP.I also have been having chest pains and am scheduled for tests pretty soon.For me AP is not working at all but as long as I take that miserable MTX I lead a normal life(for now)Will have to find out if there is a safer immune suppressant.Let us know what the SD doc has to say and when I get my results we can compare notes. Lynne Debbullwinkle@... wrote: > HI all, finally got the letter from my cardio DR...my pressure measures 28, > in the lungs but the heart is not enlarged...from sites that some of you have > sent me....the sites indicate that 14 is a normal pressure or below...and 25 > with exercise...mine was 28 at rest....My cardio DR however, does not CALL > the PH until it reaches 35...I have sent the results to my SD DR in NJ and > will see him soon...any thoughts are much appreciated...I have had chest pain > for the past month...which I am concerned about....but as usual, my DRS here > just blow it off...Thanks everyone...Take care, DEBB > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 ?Dr. has retired. rheumatic Pulmonary Hypertension > Is anyone in this group who has SD been diagnosed with pulmonary > hypertension? Also, I am trying to remember who had posted about seeing a > Dr. in Texas. > > > > ------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribe@...! Groups > Links > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 Has anyone here with RA used this Chinese herb? Sally http://www.naturalnews.com/031816_Chinese_medicine_cancer.html Re: rheumatic Pulmonary Hypertension ?Dr. has retired. rheumatic Pulmonary Hypertension > Is anyone in this group who has SD been diagnosed with pulmonary > hypertension? Also, I am trying to remember who had posted about seeing a > Dr. in Texas. > > > > ------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribe@...! Groups > Links > > > Quote Link to comment Share on other sites More sharing options...
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