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JG07

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About JG07

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  1. I have been getting IVIG 2x every 4 weeks since November. My recent blood work shows very elevated BNP, which puts me at risk for heart attack/stroke. I also have high CRP and ESU also showing that I am at risk for both. I am wondering if this is a result of IVIG or related to my lung disease. I am waiting to see doctor here and going to Hopkins in March. Seems like 1 step forward and 2steps back, again.
  2. I have been getting IVIG twice a month since November. I have a lot of lung issues and they are trying to slow the progression. I also have lupus and shrinking lung. I can tell that my skin has softened a bit. My breathing has remained the same so I consider that a good thing because it has not gotten worse. I am going again in Feb for another round. Then in March I have an appointment to go to John Hopkins. I will find out if I stay on IVIG or go to something more aggressive. IVIG treatment itself is not too terrible; very little side effects that only last a day or so. The worst part is being stuck in the hospital days in a row for 5-8 hrs. Good luck.
  3. Have been given orders today to start IVIG on Monday & Tuesday - very scared about the whole process - Hope this works - keeping positive ...
  4. I have read over and over that prednisone should never be used in someone with systemic sclerosis - I have had no choice due to my severe lung problems - to go for 2 days of high dose IV steroids - which has now been diagnosed as shrinking lung and I have now been diagnosed with lupus along with everything else. I am terribly upset as I have a great attitude and always look on the bright side. But the imuran and cellcept have not worked and I have been referred to John Hopkins to doctor. Wiggly. After looking at my records and through my rheumatologist he suggested the steroids with possible IVIG - and depending on the outcome, cyclophosphamide. I will not be able to get in to see him until after January. I feel very torn about these treatments. I have been told in these past 2 days that I have an extremely rare case. I don't want to take the steroids. It is only for 2 weeks. I know it cannot possibly be the answer and it will not stop progression. I just don't want to mask a problem that has gotten so much worse in a very short time. Major changes in PFT from May through October. Any info would be great. I will not give up. I am only 52 and married for 35 years with 2 daughters and grandchildren
  5. JG07

    SKIN

    Thanks everyone - I have been on 3000mg of Cellcept a day -
  6. JG07

    SKIN

    I have always had a dog -never had a problem - anything is possible -
  7. JG07

    SKIN

    I have noticed in the past several days that I am getting what I can only describe as mosquito bites - on my legs ,- They start out as a faint spot then within a few days look like a pimple and then a bite mark - and I am so itchy - all over - anyone know what it is called - I have systemic sclerosis -
  8. Went to Cleveland Clinic - have to have nerve study & SNIFF Test ? which is for diapram - Diag. vasulitis & polymos. All this time thinking it was PH - - I was told the way it has effected me is rare - I wouldn't have it any other way ! Continue on cellcept and wait til all new blood work and studies are complete -
  9. Well I hope I come back with some answers - I would like to feel like I am getting something accomplished after all these visits .
  10. Has anyone heard that scleroderma can effect the muscles arteries and veins leading to and around the lungs - I was told yesterday that this may be the case - My breathing is labored at all times and the fatigue is worse. I take 1000 mg of cellcept a day - going back to the pulm @ the cleveland clinic in Weston Florida on Thursday - any advice
  11. Did anyone have trouble getting approved for Revatio ?
  12. JG07

    PFT

    Believe it or not I had another echo today and rsvp pressure is now at 40. I have an appointment tomorrow and I have been waiting for approval from my Ins for Revatio which was prescribed last week when the pressure went from 17 to 27. The numbers should be enough for the ins to give the okay. I don't know if that med alone is enough or what else to expect. It seems like every week is a new adventure.
  13. JG07

    PFT

    I do want to have as much info as possible when I go to my appointment on Wednesday. From what I have read here, an aggressive approach has to be taken for PAH - and the Revatio alone is not going to be enough. Tracleer seems to be mentioned, as well as Bosentan. I have read about cyclophosphamide also. This gets very confusing and depressing.
  14. JG07

    PFT

    My rheumatologist has suggested to start Revatio, and next week Cellcept because the arteries around my lungs are narrowing and causing shortness of breath . Pulse oximetry at rest is in 70's. Echo showed pressure 17, then 2 weeks later 27. I had a lung quantitative scan today. I am on oxygen all day and extremely tired. I have an appointment again next Wednesday. My rheumatologist is at the Univ of Miami. She is certain it is PAH and does not want to subject me to right heart cath. Anyone on this med combo ? Diagnosis scleroderma, Raynauds, Sjogren's, pulmonary fibrosis 2006.
  15. JG07

    PFT

    What type of meds did they start u on - Is there one " better" than the other. I just don't understand the reason for the drop - I did not get a call back from the rhem yet - but I have my CT results - It looks like the scaring is stable compared to last CT -
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