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Everything posted by Clementine

  1. How often do you all get upper endoscopies and or colonoscopies? I know after age 50 a lot of people get the latter, but for scleroderma purposes how often does your Dr ask you to get them? I'm way over due on both and really don't want to get either. I've had them and don't think they are a big deal but I just don't want the expense or to deal with it but I know I should.
  2. Thank you! I really think it's nothing since my ECHO was normal. I just worry like crazy and it's been two years since I've had one. Hopefully I won't need the right heart catheterization. I've had one and feel they are a piece of cake, but time and money. If anyone else has anything to add, please do so. I don't like having it dilated and assume it could be worse now. Thanks. ❤️
  3. Hi All! My last CT scan shows a dilated pulmonary artery. In 2005 it was 30mm and in 2015 it was 35mm. At the time I also had an ECHO which was unremarkable. I am preparing for an upcoming appointment, with the same tests, and wanted to see what you all think. How concerned should I be? I have systemic sine sclerosis with ILD. Thank you.
  4. Hello All and Sheryl, I decided to post a new topic instead of answering Sheryl's question that was in another thread. I've had 3 laser treatments on the red dots on my face. You cannot see a difference at all. Oddly enough, I thought the first week after the treatment, once they had healed, that they appeared slightly lighter. It was a total waste of time and money. Yesterday, I told my rheumatologist he was right when he told me the treatment would not work, but I did it anyway thinking the dermatologist knew better and that new lasers may work. This is my second attempt within 5 years to get rid of them. I do have one last follow up later this month that is a freebie, so maybe, just maybe, it will work but I won't hold my breath. Not to say laser won't work for someone else. Mine are really profound and profuse. xo, Jen
  5. Has anyone else had nerve damage from having their labs drawn? Last week the phlebotomist hit a nerve while attempting to draw blood and now I have painful symptoms of nerve damage. I'm seeing a neurologist in a few weeks. I guess this could be classified as a complication of scleroderma ;). I just hope the nerve heals.
  6. Hello All, It's been forever since I have been on here! I've missed everyone. I have systemic sine sclerosis with interstitial lung disease (ILD) and secondary Sjogren's. I have been having pain in my esophagus for years now. It is a dull, constant pain and it is really affecting my well being. Do you think this is ILD related or GERD related? It is not heartburn but maybe it is the fact that my esophagus is a little abnormal. It hurts when I breathe and did I mention I am so fatigued? Can anyone relate and offer any insight? I want the pain to go away! Are there pain medications for this or do we just live with it? I am still on Cellcept and am assuming I am still stable. I go to see my rheumatologist next week for pulmonary function tests (PFTs) and an ECHO. I have an upper endoscopy coming up as well. Thanks, Jennifer
  7. Hello All, I found out that Peanut has been back at Northwestern and in the hospital, so please keep her in your thoughts. I hope that she is on her way home and doing better as I type this. If I hear anything else I will let you know. Thanks, Clementine
  8. I am positive antibody th/to. I just read that this antibody has a poor prognosis along with severe lung disease. No surprise about the severe lung disease, but has anyone else read that it has a poor prognosis? Four years of research and this is the first time I have read this. Thanks, Clem
  9. Hello, Does anyone have livedo reticularis, primary or secondary? If so, would you mind messaging me? Clem
  10. I am concerned about this also. I have disability through an insurance company, although I was also approved through social security in 2005. I can't receive SS disability due to not paying into it for over 5 consecutive years, although I could have received Medicare if I needed it. Does anyone know what my chances are of losing my status? I am stable, no miracles here, but I still wonder. Clem
  11. Barefut, I have been on and off Cellcept too, stopping cold turkey many times. I've not noticed anything odd happening. I sure hope you can get this figured out. How low are you all's blood counts while on Cellcept? Mine are on the low end of normal. I must be lucky. Do ya'll take an iron supplement? xo Clem
  12. i always need a heating pad because it's too hard to try to stay warm in someone else's house or in a hotel room when you are sharing it with someone else. Have fun!
  13. I saw a doctor. today and she felt inside my mouth. She told me she could feel fibrosis in the tissue of my chin area. She could see it when she looked at me as my face kind of pulls on the sides of my chin when I smile and appears a little tight. This prompted her to put her gloved hand in my mouth and feel around. She said she is pretty sure this is from Scleroderma and she knew that wasn't what I wanted to hear. I think this has happened within the last year. I wish there was something I could do about it. It's quite stressful.
  14. Hello, I have lip issues too. It's a bummer for sure. I really don't quite understand how this happens with scleroderma. Apparently it happens to those of us with sine scleroderma. I once had a date ask me if I smoked. I didn't end up marrying him. Lipstick looks ridiculous on me, but I wear it because it looks better than no lipstick. I wish I had Julia Roberts' huge smile!!!!!!! xo
  15. Does anyone with Sjogren's have constant red eyes and burning? I have had issues since October and it doesn't look like it's going anywhere. Still using Restasis and artificial tears. I just wonder if I need to see the doctor again, or if it's another lost cause and I just have to cope with it. Doesn't help that I just moved to one of the top 5 driest states but I did get to trade this for a lower altitude. Thanks, Clem
  16. Thanks Ladies! I tried the ointment last night and I still woke up in the middle of the night with dry eyes...ugh. I'll try some of these tips. It is such a nuisance, isn't it? xo, Clem
  17. Oh, thank you so much Jeannie! I really appreciate you taking the time to clue me in. You are an itty bitty girl....that is so cute! xo Clem
  18. I need help understanding this article. Can someone summarize it for me? I must be brain dead, but, it is only 6:45 AM. Thanks, Clem
  19. Congrats Jeannie! You are a wonderful person and you will be great at this new job. xo, Clem
  20. Congratulations Janey, you must be elated! I am very happy for you and your family! Celebrate :) Clem
  21. Anderson, I've been on Cellcept for the most part of the last 3 1/2 years. My pulmonary function tests and other things have been stable. I have been on 3 grams a day. I don't think anyone knows if 1 gram works better than 3 grams. I have never heard of anyone taking over 3 grams for treating Scleroderma. I have not noticed any side effects that I can blame specifically on any drug I take. I did have a few months where my liver panel was high, so I went off Cellcept until they were normal. We aren't sure what caused that but now I am back on it and so far, so good. You will need to get regular labs while taking Cellcept. Good luck! Clem
  22. Does anyone know if one must wean off Norvasc when taking it for Raynaud's? Thanks, Clem
  23. Jeannie, Yeah, I am sure I've been doing too much. I read last night that calcium channel blockers (CCBs) can cause fatigue. I don't know anymore. I will be moving to Texas and the weather will be warmer so it may be a good time to halt it. Besides, even when I do take it I can't tolerate the grocery store. The fatigue page on this site is wonderful. I've not talked to the doctor yet. He recommended Prednisone for fatigue and I said NO, not after the terrible side effects that caused for me, and they are permanent! Thanks. Clem
  24. Thanks, just trying to figure out the cause of fatigue and thought it may be a side effect of Norvasc.
  25. Does anyone else with Sjogren's have eye pain? It's so weird, my eyes actually hurt a little, as in a bruised feeling. I'm new to this dry eyes stuff. I have had off and on eye slime and irritation for 3 months now. I'm doing what the doctor says to do but it's really not a lot of relief. I'm using warm compresses, Tobredex when prescribed, artificial tears, Restasis, wearing glasses (no contacts) and taking flax seed oil. What else is there? I am really sensitive to light and have a constant sting in my eyes. Poor me..LOL. I blame some of this on Sweet, for getting me addicted to online Scrabble. I am pretty sure the computer isn't helping, LOL. Clem~~