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  2. Hi Stacey, Welcome to these Forums! I'm very sorry to hear that you've been diagnosed with CREST and that it is affecting you so badly. However, I'm glad to hear that you are receiving the best treatment and have a good medical team, whom I'm hoping will be able to help you with suitable medication and it's possible your disease may stabilise in the future. Kind regards,
  3. Hello to all. I am a Registered Nurse from South Carolina. I am 47 years old and was just recently diagnosed with CREST. It took over a year to get the final diagnosis. I was told for 3 years I had lupus, I had my doubts and kept looking for answers. I am now in stage III kidney failure and no one is really sure why. I go to a large acclaimed hospital for care that has a scleroderma center of excellence. I feel very good about my care. What I don't feel good about is how I feel right now. I have significant joint pain daily with horribly swollen fingers and ankles. The worst part for me other than the pain and fatigue is the swallowing issues. I just had a swallowing test a few weeks ago and was told I have classic scleroderma esophagus. I choke on heavy foods like, chicken, beef, vegetables and anything bulky. I am overweight and this is so frustrating. The only things I can eat without vomiting or pain is chips, candy, popcorn and ice-cream all of which I do not need. This is not a disease that I ever thought I would be battling. I have a 24 year old son with autism and muscular dystrophy, so that is hard enough, but to care for him feeling like this - No fun.
  4. Why it's important for patients to look at their doctor's note. Some patient advocates say a doctor's notes offer insights patients might never hear from their physician, putting patient and provider on the same page. Health News Today, 06/19/2019. (Also see Physician and Patient Relationships) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. Hi Allie, Welcome to these forums! Without wishing to state the obvious, I would suggest that as much as possible, you should avoid taking cold showers. Perhaps the best idea if you can't avoid it would be to stay in the cold water for as little time as possible, as Raynaud's tends to be worse if your core gets cold (not necessarily your extremities.) I've included a link to our medical page on Raynaud's, which does include many tips for keeping warm and preventing an attack. Kind regards,
  6. Last week
  7. Hello, I have Raynaud's pretty severely and I am going on a mission trip to a third world country in about a month. The only problem is that while I am there I will only be able to take cold showers. Does anyone have any suggestions I can try so the cold water doesn’t trigger my Raynaud's too bad?
  8. Tapering biologic therapy for people with rheumatoid arthritis in remission: A review of patient perspectives and associated clinical evidence. More research is needed on tapering biologics, and should include studies of patient perspectives as well as health economic evaluations. PubMed, Musculoskeletal Care, 05/30/2019. (Also see Treatments for Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 07/14/2019.
  10. Low RUNX3 expression alters dendritic cell function in patients with systemic sclerosis (SSc) and contributes to enhanced fibrosis. We show at least two pathways potentially causing low runt-related transcription factor 3 level in SSc plasmacytoid dendritic cells. PubMed, Ann rheumatologist Dis, 05/24/2019. (Also see Dendritic Cells) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. New Research Is Focusing on Treating Teens' Suicidal Thoughts With Support of Friends, Family. Past research has shown that people with more connections, stronger social networks, and more social support will be better off in terms of mental health. Time Healthland, 06/10/2019. (Also see Suicide Prevention) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  12. The International Scleroderma Network thanks Network for Good donors for their support! Posted 07/12/2019.
  13. Hi Janet, I'm sorry that your symptoms are worsening. Whilst I've no doubt the consultant you've selected is good at his job and specialises in gastrointestinal problems, we do recommend the scleroderma experts on our list. This is because scleroderma is such a complex disease and really does require a specialist in the disease. I'm in the UK and although I was treated very successfully by a top lung hospital (as I have lung involvement) I was still referred to The Royal Free Hospital as well, which contains top rank scleroderma experts, who are experienced in all the little idiosyncrasies which scleroderma can produce. We do have a scleroderma expert in Australia on our list, so perhaps it might be worth your while contacting them first, before travelling to the US. Kind regards,
  14. Hello friends, I’m thinking of contacting a Scleroderma clinic in the US with a Gastroentrologist who has a good knowledge and experience with Scleroderma patients. While going through the info links I found in ISN, I am thinking of contacting Prof. Michael Brown in Rush University medical centre. I think I need to get in touch with the clinic and the Gastroentrologist before travelling to the US, so I know where I am going and I might even be able to get some of the tests done in Australia where I have insurance. Is there any Scleroderma clinic or doctor you recommend that deals with gastro issues? I am not doing well at all and I feel I have been getting worse. I really need help. Everyday is becoming such a battle and never ending struggle and I don’t have any energy. Exhaustion is unbelievable. My joints are aching more and the joints in my right hand are getting very sore. All I am on regularly is an antidepressant. Nothing to help with Gastrointestinal symptoms. Sometimes I feel I am literally suffocating and it’s so scary. Can you help me find the right clinic for me in the US? Kind regards Janet
  15. Hi Christina, I'm very sorry to hear that you're suffering so badly with vertigo and are experiencing such unpleasant symptoms. Thankfully, I haven't suffered with this condition myself, but I've included a link to our medical page on Brain (Cerebral) Involvement in Scleroderma, which does have a small amount on vertigo. I've also found a couple of threads on the subject - Vertigo and Vertigo and Nausea, which I hope you'll find helpful and informative. I would also suggest a visit to your scleroderma expert pretty quick, if you haven't done so already. Kind regards,
  16. The RIG-I pathway is involved in peripheral T cell lymphopenia in patients with dermatomyositis (DM). Our study showed for the first time that negative correlation between the increased RIG-I expression in peripheral T lymphocyte and T cell count in some patients with DM. PubMed, Arthritis Res Ther, 2019 May 29;21(1):131. (Also see Dermatomyositis and Polymyositis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  17. Does anybody know of help available for scleroderma and vertigo? Vertigo has taken over my life and it is horrible! Two fractured skulls and concussions. Broken bones etc. I'm lucky to be alive. 15 years into scleroderma and this has just presented itself. Somewhere on the web while researching I found a site that mentioned vertigo, but the links took me nowhere . Does anybody have any info on this or can point me in the right direction ? Please and thank you . Christina
  18. Common Causes of Pain in Systemic Sclerosis (SSc): Frequency, Severity, and Relationship to Disease Status, Depression, and Quality of Life. The majority of patients with SSc suffer from different types of pain which is associated with more severe disease, depression and poor quality of life. PubMed, Pain Manag Nurs, 05/15/2019. (Also see Pain Management) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  19. Would you like to help scientists find a cure for scleroderma? Dozens of clinical trials for scleroderma and pulmonary hypertension are actively recruiting now. Review them and be sure to ask your scleroderma expert about the ones you are interested in. (Also see Current Clinical Trials and Scleroderma Experts) Posted 07/09/2019.
  20. Most People Worldwide Trust That Vaccines Are Safe – But the Number Who Don't Is Concerning. The majority of people worldwide think vaccines are safe, according to a new global survey – but the share of doubters is still high enough to threaten immunity. Time Healthland, 06/19/2019. (Also see Vaccinations) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
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  22. Association between histopathologic changes and expression of selected microRNAs in skin of adult patients with IgA vasculitis. Further investigation of miRNAs expression in the affected tissues could improve knowledge of IgAV pathogenesis and possibly help to identify novel biomarkers in body fluids. PubMed, Histopathology, 05/28/2019. (Also see Vasculitis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. Did you know you can help raise scleroderma awareness? The nonprofit International Scleroderma Network offers scleroderma awareness bracelets! Bracelets for just $2.50 each with free shipping and handling! They say "scleroderma" on one side and "sclero.org" on the other. (Also see Get Scleroderma Awareness Bracelets) Posted 07/07/2019.
  24. Linear scleroderma "en coup de sabre" with extensive brain involvement-Clinicopathologic correlations and response to anti-Interleukin-6 therapy. The interleukin-6 (IL-6) receptor inhibitor tocilizumab was used and the patient improved dramatically, likely reflecting the drug's effect on the replenishment of endothelial progenitor cells. PubMed, Orphanet J Rare Dis, 2019 May 16;14(1):110. (Also see En Coup de Sabre) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  25. Can Wearing a Hat Contribute to Baldness? It's the sort of thing an opinionated grandparent might tell a grandchild wearing a hat indoors, but there are some who believe there's wisdom in the admonishment. Time Healthland, 06/17/2019. (Also see Alopecia) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  26. The International Scleroderma Network thanks United Therapeutics for their sponsorship support. Posted 07/06/2019.
  27. Obstetric outcomes in patients with primary thrombotic and obstetric antiphospholipid syndrome and its relation to the antiphospholipid antibody profile. Patients with primary antiphospholipid syndrome, especially those with obstetric antiphospholipid syndrome and triple antibody positivity, are at higher risk for adverse pregnancy outcomes. PubMed, Lupus, 2019 May 27:961203319852155. (Also see Antiphospholipid Syndrome) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  28. Hi Alexa, Welcome to these forums! I'm sorry to hear that you've been having worrying issues and unpleasant symptoms. I've included a links to our medical pages on Common Medical Tests for Scleroderma and Preparing for Doctor Appointments, which I hope you'll find helpful and informative. We do recommend that our members, if possible, consult a listed scleroderma expert, to ensure that this complicated disease is treated correctly, by someone with the correct knowledge and expertise. Kind regards,
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