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Clementine

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Everything posted by Clementine

  1. Thank you! I vaguely remember discussing it with him and I’m pretty sure it was because my ECHO was good and it was a better indicator. Dr Fischer told me there wasn’t a sclero expert at UC Health now. I did see a Dr is taking sclero patients though. Now National Jewish is a center again. I wish I knew whether the sclero Dr there was really good or not.
  2. Hey! I haven’t posted here in so long. I have systemic sine sclerosis with ILD. I have gone to Dr Fischer since 2005 and am currently looking for a new DR which has me studying all my records. In 2017 I had an ECHO and CT scan. The CT scan finding says I have a dilated pulmonary artery of 35. My echo on the same day was unremarkable. I do remember discussing this dilation with Dr Fischer and he was not concerned. My memory is terrible and I don’t remember why he wasn’t concerned. Can anyone shed light why he wouldn’t be worried? I trust him fully but I’m not gonna lie, I’m concerned. I am stable and have been for for several years. I just have slight progression in the lungs. Thanks!
  3. Dr Fischer was my long time Dr. I was bummed that he was changing careers. Have you found a new Dr? Is National Jewish a new center? I thought it wasn’t when Dr F left and went to UC Health a few years ago but it appears it’s a center again.
  4. I took them together for 12 years and am fine. It’s OK❤️
  5. 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.
  6. I just had labs and my lymphocytes are really low. Is this common with scleroderma?
  7. 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.
  8. 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.
  9. 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.
  10. 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. ❤️
  11. 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.
  12. 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.
  13. 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
  14. 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
  15. Hello, Does anyone have livedo reticularis, primary or secondary? If so, would you mind messaging me? Clem
  16. 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
  17. 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
  18. 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!
  19. 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.
  20. 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
  21. 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
  22. 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
  23. 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
  24. 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
  25. 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
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