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  1. Hi-- I started having SOB in August---and for a long time thought I was just out of shape---then I started HOPING it was Asthma. Then I saw a pulmonolgist who did a bunch of tests including a (forgot the name)---something that takes out tissues from your lungs with a tube---which indicated that I had signficant inflamation in my lungs, which they worried would turn into fibrosis....and recommended Cytoxan treatments. After exploring the cytoxan stories and looking for alternative, I decided to go ahead and do it---only to come down with a flu like thing that lasted 3weeks and seemed to have made my breathing worse. It was then recommended that I start using Oxygen. I now carry around a little oxygen back-pack for when I'm walking outside or exerting energy. Scarily, they also found that my sleep oxygen levels were "dangerously" low too and they've recommended that I sleep with Oxygen (which I'm finding hard to do because the machine is so loud) After going through huge denial---I think the oxygen actually helps. So, based on my experience, I'd say have it checked out by a respiratory doctor. hoping for good outcomes, Debbie
  2. Hi all-- An odd question: Would low grade fevers (99-100) be a symptom of Scleroderma in general? I caught a bad flu like thing in the middle of February, running fevers of 103-104 for a week then 100--102 for another week. And feeling pretty badly for yet a third week. It's now 4+ weeks since it started and my temp is still 99-100, despite 3 rounds of antiboiotics. Maybe that's what's it's been before the flu, maybe it's something else...any thoughts? DRE
  3. Megan-- I'm so sorry it's all piling up. The only thing I can offer right now is something you probably aren't ready to hear yet. There are lots of ways to have children--but it doesn't always look the way you want it to look or thought it would. I became a mom at 48.5, single using donor egg and donor sperm. It's not how I thought my life would happen and every step of the way there was a mourning for what I was giving up, acceptance that I still wanted to be a mother this way, and joy that there was still a way to do it. Didn't want to do it single, didn't want a unkown sperm donor, wanted my own eggs. I did give birth (something I wanted to experience) to an amazing boy 4 years ago. But alas, I believe the pregnancy released the Scleroderma which until then had been farily subdued. So now I am trying to live with knowing that I'm not going to be the mom I thought---bike riding, hiking and running with my child---I can barely make it down the block without getting out of breath. So--mourn the loss---but explore the options---adoption-domestic, international, surrogate moms, whatever it takes until you can no longer compromise----and have a baby and love it and be well. Dre
  4. Yes! My hands cramp all the time (I keep thinking it's because they're so puffy the muscles are being forced to act in unnatural ways. And yes, my legs feel like they weigh tons (in those rare moments when my knees are hurting and I can breathe) when I try to walk at a normal pace. I hadn't really been able to describe it---you captured the feeling. DRE
  5. Peggy-- From what I've just been told recently, symptomatic breathing issues often show up before they register on Ct scans or lung function tests. Since my last lung function test in April, I've been having a hard time breathing. THe tests I just took last month did not show anything much different than the April tests, but the bronchoscopy lavage thing they did showed a significant amount of inflammation. So it might be something worth mentioning to a doctor, if you haven't alread. Dre
  6. I've been seeing a rhuematologist in NYC for about 6 years, and I love him---only---now that my symptoms are getting worse, and we've really done nothing proactive to treat (given my own aversion to medication mostly)---I'm wondering if I should seek out some second opinions (especially now that pulmonologist has recommended cyclophosphamide--see other post). Don't know if it's allowed on this site---but any recommendations in NYC--or places to look. Thanks Dre
  7. Hi- So the pulmonologist recommends treatment with cyclophosphamide given the level of inflammation found in my lungs based on lavage. My lung function and ct scan are no worse than they were in April, but I've been having more trouble breathing and coughing more in the past 6 months. The benefit seems so uncertain compared to the risks. I'd love to hear from people who chose to do it and those that chose not too. I'm 52 and single mother of a 4 year old. I've never been on any meds for Scleroderma and feel like this is a big jump into the abyss. Thanks Dre
  8. Hi all: I'm new to this site. After preganancy about 4 years ago, I started getting accelerating symptoms of Scleroderma (before that I had reynaud's and puffy hands, but few other symptoms). Now, fingertips and cuticles have so many sores, I can barely feel anything, my lung capacity has started to diminish and I get bouts of acid reflux almost everyday---in addition to general knee stiffness and puffiness and weakness. I go to my rheumatologist and he confirms that "yup, it's progressing". He suggested that I consider being part of the clinical trial for Gleevac, but I didn't qualify based on a better than required skin score. I am about to go see a pulimanologist. What could/should I be doing to at least minimize symptoms. Thanks
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