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Everything posted by pieski

  1. I have been on Cellcept for over a year. It isn't a pain reliever. I have also been having a great deal of pain and was put on Lyrica. It has helped a lot. Really, a lot. Maybe you can ask your doctor about it.
  2. Something about health insurance. If you get a job that has group coverage, they can't turn you down due to preexisting conditions. I work at a hosptial. I work 24 hours a week and have full benefits. There are jobs out there that you can get with insurance. If you can get a job, I would recommend it. It gets you out among people. A great boost for morale.
  3. pieski


    Did you change your eating habits? I have read that weight gain is common, and am hoping to keep it in check by really being mindful of what I am eating.
  4. Is anyone taking Lyrica for neuropathy pain? My doctor started me on it this week and am curious about others experiences.
  5. The skin on the tops of my feet has gotten super sensitive. Any ideas on what I can do. It hurts to even have socks on.
  6. Today at work I was talking to one of the girls in her office. She said that I looked different. I asked her what she meant and she said, "Now you don't have to tell me, but did you have some work done? You look younger!" I started laughing so hard! My skin is getting a little taught, so I guess that is a good effect! LOL
  7. I am so happy to hear that I am not alone with my feet issues. The past couple of weeks I have also noticed the skin on the bottom of my feet and the palms of my hands is thickening. My feet hurt so much that I have been sleeping on the floor with my feet up on the bed. I wear woolly clogs to work even when it is 100 plus outside. I am beyond frustrated, but I try not to let my family know exactly how much pain I am in. I am in pain 100 percent of the time on some level.
  8. Most definitely stamina and the ability to breathe! I can't even walk up a flight of stairs without having to stop 1/2 way. I tried going to 6 flags with my family today and I couldn't even make it up a small hill. Truly a bummer.
  9. The only place I am experiencing really bad tightening of the skin is on my feet. It is getting so bad that my toes are hard to straighten. Really annoying and pretty painful.
  10. pieski


    I swear it feels like my feet are dying. Just from the balls to the tip of my toes. They get so cold it feels like they are burning. Last night I had socks on and my feet under the blankets and I had to get toe warmers. I live in Phoenix, so its not like it is freezing cold here. Has anyone else had similar experiences and if so, what do you do to alleviate the problem?
  11. Hi and welcome, I wouldn't start to panic just yet. Wait to see what the rheumatologist has to say first. It does sound like you may have Raynaud's in your hands, but that is also common in people without autoimmune disease. I use handwarmers and they help a lot when the weather is cold. Good luck to you.
  12. Hi, I did the IV cyclophosphamide for 9 months. If yours is done the same way you will get lasix at the end. If you don't live close, stay at the office for a while, you will have to pee.....A LOT! I had mine on Thursday mornings, would go to work Thursday afternoons and be fine. By late Thursday night I would start feeling cruddy. I spent all of Friday in bed, zofran was my friend! After the first time, my family knew to just leave me alone. Saturday I would start to feel better, and by Sunday I was fine again. I didn't lose my hair, although it did thin out a bit, and as far as I know there have been no ill effects. Good luck to you.
  13. Hi, I also have ILD and that is how my sclero was diagnosed. I had 9 months of IV cyclophosphamide which stopped the progress for about 2 years. I have gotten worse lately and was just started on cellcept. Hang in there.
  14. I have ILD. I did 9 months of cyclophosphamide which did help a lot. Now after 2 years symptoms seem to be returning and I have been put on cellcept.
  15. Is there such a thing? I sure feel like it.
  16. Hi, I feel your hip pain! My hip has hurt for about 5 years now. I had an x-ray years ago that showed nothing. I mentioned it to my rheumatologist. last visit and he did a weight bearing x-ray, which showed osteoarthritis and he said I would proboably need a hip replacement in a few years. I spend alot of nights sleeping on the floor because that is the only way to relieve the pain.
  17. pieski


    Has sclero affected your eyesight? Mine has gotten so much worse in the last couple of years and am wondering if it is from the disease.
  18. I just started cellcept yesterday and am wondering if any of you had initial side effects? I am really, really tired today and am hoping that it is just a coincidence :(
  19. Hi gigi, I find that when I am getting puffy if I drink herbal tea and lots of water it helps a lot. Its like the more good fluids in, the more bad fluids out. Know what I mean?
  20. In order to see if your lungs are getting fibrosis, you should have a CT done.
  21. Still in the 90's here in Phoenix. I work in the OR at a Children's hospital and it is freezing all year. I just bought a pair of the fur lined crocs and they are keeping my feet nice and warm at least.
  22. Any suggestions on what to do when an ulcer is starting? I have one starting on my finger tip, I have nitrobid cream but am wondering if anyone has any other suggestions.
  23. I did cyclophosphamide for 9 months about 2 years ago. I have lung involvement and it stopped the fibosis from spreading. I did mine IV once a month. My doctor did blood work every month and urine to make sure my bladder was ok. My lungs have gotten a bit worse so I am going to be starting cellcept next month.
  24. Hi Barbara, I am pretty new here, but I think the drug you are talking about is cellcept. My doctor wants to put me on it next month. I have lung involvement as well and did round of cyclophosphamide, which is not the drug of choice anymore. I also see a pulmonologist who keeps an eye on my pulmonary function. Has she had a CT scan to determine the lung involvement? Good luck to you and your mom.
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