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Everything posted by Clementine

  1. Clementine


    I just had labs and my lymphocytes are really low. Is this common with scleroderma?
  2. 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.
  3. Clementine

    CellCept Levoxyl

    I took them together for 12 years and am fine. It’s OK❤️
  4. Clementine


    I do have systemic sine scleroderma, Sjogren’s and ILD. I don’t recall being so low and I have had a lot of labs. I always thought our WBC was elevated with autoimmune diseases. I’m going to check out the link. I can ask my dr but the appt is a month away and I am curious.
  5. Clementine


    My lips are smaller and I have sine scleroderma. Several doctors have noticed but I really don’t know if it is due to ageing or scleroderma. Dentist comment that my mouth is small and recently my GI Dr mentioned the mouth puckering up.
  6. Clementine

    Upper Endoscopy/Colonoscopy

    I met with a GI Dr yesterday and I don't think I am getting either procedure. I feel terrible everyday and it's GI related but I'm trying to get better with Nexium and xifaxin.
  7. Clementine

    Dilated Pulmonary Artery

    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. ❤️
  8. Clementine

    Dilated Pulmonary Artery

    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.
  9. 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
  10. Clementine

    Nerve damage from labs

    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.
  11. Clementine

    Pain in chest

    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
  12. Clementine

    Our Sweet Peanut

    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
  13. Clementine

    TH/TO Antibody

    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
  14. Clementine

    Livedo reticularis

    Hello, Does anyone have livedo reticularis, primary or secondary? If so, would you mind messaging me? Clem
  15. Clementine

    Disability Review

    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
  16. Clementine

    Cellcept Taper

    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
  17. Clementine

    How many people travel regularly?

    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!
  18. Clementine

    Anyone seen my top lip? No? Me either!

    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.
  19. Clementine

    Anyone seen my top lip? No? Me either!

    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
  20. Clementine


    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
  21. Clementine


    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
  22. 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
  23. 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
  24. Clementine

    Congratulations, Jeannie McClelland

    Congrats Jeannie! You are a wonderful person and you will be great at this new job. xo, Clem
  25. Clementine

    Just have to share some good news!

    Congratulations Janey, you must be elated! I am very happy for you and your family! Celebrate :) Clem