fragiledancer2

Members
  • Content count

    44
  • Joined

  • Last visited

About fragiledancer2

  • Rank
    Senior Bronze Member
  1. I am applying for SSDI, I've had Diffuse Scleroderma for many years. My question. After 24 months on SSDI you can go on Medicare. My spouse has great health insurance which I am on. Will that insurance no longer keep me on if I am on Medicare? They pay for many more drugs then Medicare would not approve (through appeals) so it's quite important. Thanks.
  2. Yes, I went five days last week and although there were some minor issues it went well with little bad effects. I will be deciding whether to have a port for easier access. I can't imagine doing this for a year though as we are thirty traffic congested miles away from the hospital. I could consider home care but not sure I'd feel confident about the nurses. We'll see and I will keep you posted.
  3. I am starting intravenous Gamma Globulin (IVIg) 5 consecutive days once monthly due to a relapse. Has anyone had this experience? How many months is the protocol, and have you seen results?
  4. Hi- My rheumatologist is recommending IV Rituxan if my 3 gram Cellcept is not working - I relapsed after 12 years. I wonder if anyone has been successful in getting their insurance to pay for this - and what data you have given them, as I just got notified my insurance will not pay. Somebody at the office does the authorizations, but I wonder if my sending in recent academic research articles on successful Rituxan trials might be of benefit.
  5. Hi- I had severe Raynaud's and nearly lost some fingers. I was put on Revatio and have not had an ulcer since and I live in Chicago. Although I have very low BP Revatio has not made it decrease even further.
  6. Hi Peggy I too have terrible reflux and NO motility. I was put on 120 mg of Dexilant which is a newish PPI, really time released Prevacid, and it has worked very well for me after trying high doses of every PPI including Prevacid.
  7. Hi! I have had Diffuse for 12 years now and was put on Cellcept originally. Things started slowing down after a few years. If I go off the usually 1 gram of Cellcept I get some retightening. But a couple of months ago I began tightening very quickly and severely, and my Rodnan score is about what it was in 2000. My rheumatologist who is a specialist told me relapse is rare after all these years. I did have an MRA a couple of months ago where Gadolinium was used-but my kidneys are fine so there is not supposed to be any deposit of metal in the body. I am now on 2 grams of Cellcept-was on 1 which usually suppresses things. Then to 3 grams and then Rituxamib if there is no slowing. I would appreciate any responses from people with a similar experience.
  8. Hi- anybody found anything to protect finger tips when using my laptop? I have tried rubber finger thimbles, added soft putty or moleskin but my index finger really gets painful with an ulcer. Anybody using a stylus with Ipad or computer?
  9. It wasn't the Revatio-it was the antibiotic I was on Levaquin that can cause monoclonal chorea like movements!!!
  10. Me again! Thanks for all your replies on the fingers. I am getting botox next week. My blood pressure is already quite low, but I will ask about the calcium channel blockers. Has anyone using Revatio or Cialis noticed restlessness or twitching at night? I was on a small dose of Reglan for 14 days and developed restlessness, so stopped and began the Revatio slowly after that. I know it can cause insomnia which has been awful. Appreciate any experiences you've had.
  11. Thanks guys - Tried the honey but anything spread and covered is the kiss of death - but I know it does help for some.
  12. Hi again-more issues! Now that it is cold my ulcers have begun and 2 have necrotic skin-I just don't heal anymore-greenish skin growing on ulcers, etc.. My rheumatologist is sending me for a MRA of the upper extremities. I do have mild aortic stenosis due to a bicuspid and mild LVD which may effect my circulation. I keep my hands and core warm with warmers and try not to traumatize them-but I have to use my hands. I keep them moisturized. I started on Revatio a week ago-not sure how long it takes to work. My rheumatologist also talked about IV Remodulin as a last resort,He added a baby aspirin as well. I will make an appt with a hand surgeon who could do Botox. Putting antibiotic cream and covering them is the kiss of death. I've had ulcers for 10 years but never like this.. HELP!
  13. This follows up on my previous posts. I was put on Reglan 5mg 3 times daily until I could get the Motilium. After one week I developed a terrible physical restlessness and so went off on Monday. I am still feeling it! I read that although Motilium has fewer neuro side effects the difference statistically for Akathisia between the 2 drugs is minimal. Now, I am reluctant to take the Motilium. Of course I will talk with my doctor. He also wants me to try Zelnorm which also stimulates things. Any experience on when this will go away?- I was only on Reglan for 10 days, and these effects on Motilium. Thanks
  14. Thanks all-the ph catheter recorded mild acid at 6.8 in the lower part of my esopagus only, and only at night, not during the day which is when I feel most of the acid mouth. On 2 prevacids or Dexilants I feel the heartburn in my chest. With 4 I feel it only in my mouth-weird! The Doctor said the tissue in my esophagus has been somewhat stripped and so I am tasting an "acid" thru nerve endings but it is controlled. He also thought I might be confused with bile. I am worried that I am aspirating into my lungs though. Have been on Reglan now for 4 days with no improvement-5 mg. Will go to 10 and then switch to Motilium if it helps. Thanks again!
  15. I wrote a few weeks ago about my ph test, acid mouth and no motility. I have been put on 120 mg of Dexilant which is a time released Prevacid. Some improvement, but still acid mouth, no classic heartburn. I am starting on Reglan and will switch to Motilium (where to buy?) if it works I am hoping my motility issue is part of the problem. So far though, no change. I have read here a few threads on motility and reflux, would appreciate any additions thoughts. My acid on ph test was 6.8 and only near the bottom of esophagus and only at night even though I taste the acid a few minutes after breakfast and throughout the rest of the day. The doctor said I may have esophogeal hypersensitivity. Any thoughts? Thanks.