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dustygal

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About dustygal

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  1. Dear Monu, Wow. I remember this battle from my work days. I worked in a building where they could not turn off the AC--it was a total building temperature control system or something, but it did individualize each work area. So, I got a letter from my doctor saying that I HAD to be able to use personal space heaters. I smile thinking back on that time. It was the most frustrating, annoying, and ironically funny time of my work years. I would turn the space heaters on in the morning, and in about 30 minutes the AC would crank up. I would crank the space heater, and the automatic
  2. Hi Eos, I have never had prostaglandin treatment. However, I did/do have severe Raynauds with digital ischemia, ulcers and the like. I am now in really good control, so I thought I'd pass along some treatments which have helped for me. They may or may not be appropriate for you. However, I think it's always best to know all of your options. My doctor was thinking about doing IV prostacyclin treatment (NOT prostaglandin--they're different but sound alike), but ultimately I did not need it. I had tried revatio, nitroglycerin, IV heparin, coumadin, which I am off of now, and norvasc
  3. Dear Seton, Boy, it sounds like you are getting a bit yanked around! I am sorry to hear that your doctors are uncertain of what to do with you! :wacko: However, here's my two cents for today: I and many others taking immunosuppressive therapy have to get TB tests annually. I do not believe that scleroderma causes a false positive test result. However, there are things that CAN cause a false positive, including prior BCG vaccination. In these cases, the QuantiFERON Gold TB test can be done. It is a simple blood test. If your doctor is worried about a false positive, this blood test ca
  4. Sharon, If you find the answer, I'd love to know. To be honest, I think nothing about scleroderma drives me as crazy as the deep vertical groove lines above what is left of my upper lip. We all know smiling helps, but no one can smile all the time. I feel for you, but know that I am in the same boat. It's so frustrating... Hope it helps just to know that I feel your pain. :) Dusty
  5. Dear Vanessa, So sorry to hear of your diagnosis. Everyone is giving you great advice for your nose, so I will try to add my two cents to your hands. I think it is great to move and stretch your hands. In fact, for the first 2 years I saw a hand therapist who helped me move my hands to try to prevent permanent damage. I really think it helped. I cannot make a fist, but I do have some mobility. If your fingers are starting to curl, your doctor can prescribe a splint or brace to wear at night to keep the fingers straight. I have one, custom made by my hand therapist. It's a
  6. Dear Vanessa, So sorry to hear of your diagnosis. Everyone is giving you great advice for your nose, so I will try to add my two cents to your hands. I think it is great to move and stretch your hands. In fact, for the first 2 years I saw a hand therapist who helped me move my hands to try to prevent permanent damage. I really think it helped. I cannot make a fist, but I do have some mobility. If your fingers are starting to curl, your doctor can prescribe a splint or brace to wear at night to keep the fingers straight. I have one, custom made by my hand therapist. It's a
  7. Thanks to everyone for welcoming me to the site! It's great to be in a such a supportive place. :thank-you: I look forward to learning lots from all of you. I am also pretty well educated about this disease and eager to share my hard-won knowledge with others. So please let me know if I can share my experiences with you. But what I don't know much about is computers. So, how do I add a photo to my newbie name plate? Love, Dusty
  8. Hey, Susie Q! Well, we're birds of a feather! I'm lucky, though, not on oxygen. I guess my lung disease is "moderate" with my DLCO in the 60's before I started the cyclophosphamide. I have some nodules and ground-glass reticulation on my lung CT. MY FVC and FEV1 were about 115% of normal when I was diagnosed, but fell 40 percentage points to the mid-80's just before the cyclophosphamide. After cyclophosphamide, my DLCO rose a little but my FVC and FEV1 fell a little. They say I will have to wait another few months to find out if my lung disease actually stabilized. I used "high dose" cyclopho
  9. Hi! I'm new here and have enjoyed reading several posts tonight. I was diagnosed with systemic sclerosis in May, 2007. I have completed an 8 month course of cyclophosphamide this year for interstitial lung disease. I've been off work since January of 2008. I also have autoimmune hypothyroidism, scleroderma-related rheumatoid-like arthritis, esophageal dysfunction, and diffuse skin changes. I am Scl-70 positive, ANA positive, and anti-centromere positive (even though I know that Scl-70 and anti-centromere are supposed to be mutually exclusive--I just can't help myself). I love spending time
  10. Hi, Seton, If you felt sick immediately afterward, it might be an allergic reaction to the PPD test itself rather than true tuberculosis. This happened to me a few years back. My whole arm swelled right away after the test, but didn't look too bad after 72 hours. I had to see specialists and was briefly kept home (because I was coughing) but eventually it was determined that it was an allergic reaction. There is a blood test which can help differentiate an allergic from a true reaction, called the TB Quantiferon gold. I now get that blood test annually. It is more expensive than the skin t
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