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Everything posted by KarenL

  1. Thanks soooo much everyone. I have been absent here due to fighting this with all my might. My doctor is increible, he's been with me every step of the way. We have been through two levels of appeal, and both have been turned down. The problem is that we had different insurance last year, this will be the first time for THIS insurance company, Blue Cross/Shield. I am going to look up the cochrane info that lizzie reccommended and write my third letter of appeal. I even faxed them four entire studies, all positive. In their last rejection letter they said that "since the policy clearly states that expeimental drugs are not covered, flolan which is not approved by the FDA for raynaud's is not covered". Going by that statement sounds like an open and shut case...but I will try again. Thank you too Gidget, for your lengthy response. I did sit in on the last panel, over the phone, they are in WA and I am in NY. I told them how I have already lost the tip of one finger and also that I cannot take most other meds because of my heart issues. They still said no. I will look into finding out if they ever covered anyone else. Any ideas on how to do this? And yes, my doctor has written many peer reviewed articles and is a major scleroderma expert. I LOVE him!! :D Thanks again! Karen
  2. Hi all. I had the flolan (ileoprost) infusion last year, but now my new insurance is putting my doctor through the mill again. It's been through an appeal already and now into the second appeal. What's the big deal? Anyone have any really good ideas or information that could sway them? It got me through last winter and I'm so afraid of losing another finger tip! Karen
  3. I don't think it can hurt to take potassium on a regular basis. It does interfere with some meds at high doses, so do check first. Magnesium at bedtime helps too...good luck those are painful! karen
  4. Sclerodema can cause thickening and hardening of the blood vessels. I have coronary artery disease and moderately severe Raynaud's . I lost a finger tip to gangrene and have four coronary stents due to sclero...it's all related. Karen
  5. Hi Sam, I'm a week late and just getting to responding. I feel for you, I have that pain too. It's amazing to me how so many areas of our bodies are affected by this disease and we all experience similar pains. I have/had the neck and shoulde pain too and for me, the chiropractor is a god-send. I was never one for chiropractic, but have become a believer. Good luck, hope you are better by now. Karen
  6. Me too! Never thought it was the sclero, but now that you all say it happens to you... I discovered the trick to stopping the scab...before you put your earrings on, rub a tiny bit of neosporin on the hook or post. I haven't had the problem since I started doing that. Good luck! karen
  7. Hi Shelley, Thanks for the welcome and the thoughtful response. Thankfully I do not have congestive heart failure! Coronary Artery disease is simply a problem in the arteries surrounding the heart. My heart itself is wonderfully strong and healthy. No pumping or valve problems, nothing wrong internally. The arteries are blood vessels and as such are affected by scleroderma. They, like the little ones in our hands also are suseptible to fragility, and spasms. Plaque to a lesser extent and something called coronary calcium build up in the cardiac arteries of scleroderma patients. I have excellent cholesterol levels (158 with HDL being 98 of that), so the doctors think it is the spasms and the fact that the arteries are fragile anyway, that cause my arteries to break open on the inside and release plaque into the artery. We sclero patients also tend to over-build scar tissue. So when I had a stent placed in May of this year, the scar build up and calcium was able to get a hold on it and re-block the stent in only four months. The doctor says it's some kind of a record...oh great, just the sort of record I want to be famous for! (note the sarcasm?) :P Anyway, my cardiologist approved the flolan shortly after I posted my question and in fact was enthusiastic that it should help my coronary arteries to open up as well. It's a major league vasodialator. Thanks again, isn't it amazing how in communities like this we become friends and care so much about each other? I remember back in the early to mid 90's, my daughter, then 14 was so into the internet and I just didn't get it. She'd talk about her 'friends' and I'd rant saying "you never even met these people"! But now I understand. I even met my husband online! Peace to you and yours, Karen
  8. SInce scleroderma is an autoimmune problem, it jsut seems to go with others in that category as well. It also goes along with inflammatory issues, ulcerative colitis and the like. My colon was removed 12 years ago. I also have GERD and the beginnings of Barrett's. I take Prevacid for the upper and Canasa suppositories for the lower. I also take a high potency vitamin drink. I have celiac disease too, so have absorption issues. It's a constant battle and very time consuming with all the various issues we have! Karen
  9. sound like colitis, have you been checked?
  10. Revatio (viagra) is very useful for PAH. Google it and you'll see! Best of luck, Karen
  11. Hi, Haven't been here in awhile but I've been busy. The sclero is affecting my large blood vessels now, and I've had three heart attacks and four stents since July of '05. I am wondering if anyone else is experiencing this and have you had flolan infusions with CAD? (Coronary Artery Disease) My Doctors and I are all scrambling to find out before winter sets in. ANy info would be appreciated! Karen :unsure:
  12. I agree. I had the exact same experience as you did. Two years later, my affected finger is obviously smaller than the one on the other hand with a weird nail , but it's there! When I had the gangrene, forget the nitro, too painful, but now, with another finger thinking about it, it's helping. Peace all, Karen
  13. We CAN use Viagra! My rheumatologist prescribes an alternative that is more likely to be covered by insurance, especially for women, it's called Revatio.
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