Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

Posts posted by bowbec

  1. My gastro doctor just told me my esophagus was paralyzed from the scleroderma. She prescribed a compound drug, domperidone, and Dexilant. Has any one taken these drugs? And if so, did they work. My reflux is so bad I have a chronic cough and I keep tearing intercostal muscles. Very painful! Any advice at all?

  2. Do you know anything about a frozen shoulder? Treatment or exercise? Surgery? This has been going on for the past 6 months. I am currently taking over the counter NSAIDS for it. Helps but still lots of pain, Any Suggestions?:emoticon-dont-know:


    I have diffuse Scleroderma. Just tapered off prednisone. Been off now for one month.


    I had steroid shot in my shoulder in June but no help at all. I'm going in for x-ray next week. My doctor wants to check for tears and damage before proceeding.





  3. Hey Everyone,


    Have you every tried corn bags to stay warm? These are home made (of course they also sell online) cloth bags about 22 x 9 inches filled with about 4 pounds of clean feed corn.

    I received one as a gift last year and this year I made them and gave for gifts.


    Anyway, you put this bag in the microwave for 3 minutes and it stays warm for an hour or more. I lay it in my lap while I am at the computer and also take it to bed with me. It is great! Better than a heating pad cause you don't have to worry about turning it off!


    Stay Warm!


  4. Karen,


    Check into silk long john underwear. You can get through popular mail order catalogs.

    Wear the pants, if you can't wear the top, wear 2 lab coats... If she can't see them..ie, underwear... how would she even know?

    I wear the silk underwear long johns under my uniform because it is not bulky. It is very comfortable too!


    Stay Warm!


  5. Michelle,


    I presently have a finger ulcer. My doctor called it a digital infarction. He said the finger looses blood supply and dies. When it is dying it is the most painful. He prescribed Nitroglycerin cream as a topical ointment to be applied directly on the ulcer. I also take procardia 60 mg for my circulation and one baby asprin a day.

    Keep them clean and protected. Hope this helps!


    Bless You,


  6. Teresa,

    I have found that those metal finger splints work well to protect the finger from being bumped. Found at any drug store cheap. Don't pick at your fingers and keep antibacterial cream on them.

    They are a real pain and they seem to take a long time to heal!



  7. Thanks to all for the information!
    One thing that I didn't mention was that my doctor stopped the Methotrexate when he put me on cyclophosphamide. I am taking the cyclophosphamide pills not IV. Also fatigue was extreme when I first started but now back to normal. (whatever that is...)
    I am still working 32 hours a week. (which is full time where I work).
    All in all I am feeling quite well, but dreading cold weather of course!
    Thanks again!

  8. Hello Everyone,
    I wanted to know the pros and cons of cyclophosphamide versus Cellcept.
    I have diffuse Scleroderma.
    My last tests revealed lung involvment. Since then, I have been taking cyclophosphamide(4 months). I am going to be on it for 1 year. I am drinking lots of water.
    The only big side effect I have noticed is hair thinning. I really can't tell big improvements yet except that the skin on my hands is getting looser and my gastro problems may have improved some , so I must be responding in some way. It is so hard to know the difference in what works and what just happens with diffuse Scleroderma.
    I will see my rheumatologist for a follow up next month. I don't think tests will be done until the year on cyclophosphamide is up...
    I really do value the information I get on the forum.
    Thanks in Advance!

  9. looking4answers,


    Maybe you should contact Red about her Doctor. She wrote in a post several days ago...

    He tells me my rheumatologist doctor is probably the best in the Northeast USA (if you google sclero experts in the Northeast you get only my doctor and one more in New York City.) ...

    I think you posted that you live in the same area.


    Hope this helps!


  10. Rainbow,

    Please look at your glass half full NOT half empty.

    You have been given excellent advise already.

    Again, Not everyone with scleroderma has all the symptoms.

    I have Systemic Scleroderma and I am still able to work, I rarely miss a day.

    I have 7 grandchildren and I keep them often. (not all at the same time though).

    Look on the positive side. You are young and every day research reveils new treatment for Scleroderma.

    I hope this helps.