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  1. Today
  2. I’m always wanting to go to any one of my doctors and hear “you are doing great, we don't need to do anymore tests or change your medications”. But that is only a dream. I saw my gastroenterologist Monday; my choking is getting worse, the part that opens and closes is getting smaller and the part in my throat between c4-c5 is getting harder. The funny thing about this is, it is not the little uncoated pills, which go down better than the coated capsules. An appointment is being made to see a speech therapist. I was also told I can open the capsule and crush the others, except the pain meds and the one I can not say, let alone spell! A good friend tells me to always remember to say it is what it is. My son is now living with me; it is so nice to have support in the home. I wi!I be keeping my thoughts about everyone that has scleroderma. Quiltfairy.
  3. Yesterday
  4. My sincere regards to you all, I am tired, in pain, and struggling. My story is very long and boring. Things went very wrong about 3 years ago. I became particularly ill after my hysterectomy which I thought was the cause of some of my problems. I started losing weight rapidly and developed a lot of Gastrointestinal symptoms. I started feeling the cold all the time and haven’t stopped since. I have a lot of abdominal pain and distension. I feel the food gets stuck in my oesophagus. I feel nauseous most of the time. Sometimes the abdominal pain is so great that even walking or sitting hurts so bad. For a while my doctors thought something has gone wrong during the operation but after a lot of investigation they couldn’t find anything. Eventually one doctor suggested that get tested for a few autoimmune diseases and I was ANA & SCL70 positive. I was referred to a Rheumatologist (one of the few doctors with special interest in Systemic sclerosis and one of the 8 on the advisory board of Scleroderma Australia.)After checking my lungs and heart, etc. she said I don’t have scleroderma because my skin doesn’t show any thickening etc and the type that effects the internal organs such as gastrointestinal system and it doesn’t effect the skin which is called “Systemic Sclerosis Sine’ Scleroderma”. She said I don’t have it “because it’s very rare”!!! I have done a lot of research and all my symptoms are those of what she called very rare, so I can’t have that. I tick all the boxes. Now, I don’t really care what it is called but it has destroyed me. The pain, exhaustion and all that goes with it has proved unbearable. Nothing seems to help. I have tried all sorts of medications and diets but nothing seems to work for me. I feel incredibly sad. I feel extremely depressed. I can’t see why whatever it is that I have, rare or not, just end it for me quicker and ends my suffering. I haven’t any direction or support from any of the doctors I have been to in terms of how to manage this thing. Every now and then I might feel a little bit better and immediately I think that it’s all over and start planning and get my hopes up. It doesn’t take long for the whole world to come tumbling down. Sometimes not even half an hour. I don’t know what to do. I have made my doctors to get blood tests done & check for SCL70 & it keeps being positive. My symptoms persist. I have no hope. No reason to go on. I seem to be forever in bed. Severe Gastrointestinal problems and joint pain in different areas that flare up badly, etc. I am so tired. I don’t know how to go on. I don’t know how to stay positive. I am sick of going to doctors and come out empty handed. Sick of explaining my symptoms to new doctors. I am drowning is an ocean of sadness and despair and don’t know how I can pull myself out.
  5. Help. Looking for help finding a doctor who specializes in Scleroderma near Seattle, Washington. My wife was recently diagnosed and we have had difficulty getting her the help she needs. Any helpful information would be great. Thank you, Joe Petersen
  6. Last week
  7. A Meta–Analysis of Treatment for Primary Sjögren's Syndrome. Reducing inflammation potentially improves salivary gland function. No individual immunomodulatory drug demonstrated consistent benefit in xerostomia and xerophthalmia. PubMed, Arthritis Care Res (Hoboken), 05/06/2019. (Also see Treatments for Symptoms of Sjögren's Syndrome) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 06/16/2019.
  9. Interleukin-17 pathways in systemic sclerosis–associated fibrosis. There is multitude of evidence from across different tissues that interleukin-17 (IL-17) and its downstream pathways are strongly associated with the initiation and propagation of fibrosis. PubMed, Rheumatol Int, 05/09/2019. (Also see Interleukins and Skin Fibrosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  10. Glucosamine Tied to Heart Benefits. Glucosamine, the dietary supplement widely used for arthritic pain may reduce the risk for cardiovascular disease, researchers report. New York Times, 05/14/2019. (Also see Supplement Guide) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 06/14/2019.
  12. Hi AMDG, Welcome to these forums! I'm sorry to hear that you've been diagnosed with scleroderma and other unpleasant associated diseases. Blood test results can be tricky at the best of times and can fluctuate from test to test; even the results being taken from different laboratories can cause them to be positive, negative and back to positive again. Please see our sticky thread on the subject of blood test results. Of course, it's possible that the use of Rituxan could have improved things for you; the best person to advise you about this is your listed scleroderma expert (or failing that, a very good rheumatologist.) Kind regards,
  13. Earlier
  14. Soluble TNF-R1, VEGF and other cytokines as markers of disease activity in systemic lupus erythematosus (SLE) and lupus nephritis (LN). These results indicate that for active LN, sTNF-R1 could be a useful serum cytokine marker, with potential for vascular endothelial growth factor in the urine. PubMed, Lupus, 2019 May 2:961203319845487. (Also see Diagnosis of Lupus and Interleukins) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  15. Diagnosed with scleroderma, telangiectasia , sclerodactyly, Raynaud's, constantly puffy fingers, arthritis, arthralgia, excessive weight and muscle mass loss, fatigue, GI issues etc. Had positive ANA, then Positive SCL-70 twice. After 6 infusions of 4 hours each with Rituxan over 12 months, all blood work negative, skin softer, all else the same. Can Rituxan do that?
  16. Hi Lee, Welcome to these forums! Raynaud's does mainly affect fingers and other extremities in the cold weather, altough the fingers can turn red and purple as they warm up. Primary Raynaud's can occur on it's own and needn't necessarily be a symptom of scleroderma, although it does occur in the majority of scleroderma sufferers. However, I would suggest that if the hand symptoms you're experiencing are concerning you, you should make an appointment with your primary doctor, in order that further investigations into the problem can be made. Kind regards,
  17. I am new to all of this. The joints on my knuckles and fingers turn blue and purple in the cold, but I am now seeing they are turning a reddish pink in the heat in the same exact spots. I tried to google this but it just talks about Raynaud's and does Raynaud's effect your fingers in the heat or just the cold? Thank you very much. Lee
  18. Cytometric Characterization of Main Immunocompetent Cells in Patients with Systemic Sclerosis (SSc): Relationship with Disease Activity and Type of Immunosuppressive Treatment. In SSc patients, increment of T double positive and reduction of T double negative as well as natural killer and natural killer T cells were observed. PubMed, J Clin Med, 2019 May 8;8(5). (Also see Natural Killer Cells) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  19. The Debate Over Office Temperatures Just Heated Up, Thanks to a New Study. The question of how cold to keep an office often splits workplaces by gender, since women typically prefer a warmer workspace than men for reasons both biological and sociological. Time Healthland, 05/22/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  20. High levels of circulating interferons (IFNs) type I, type II and type III associate with distinct clinical features of active systemic lupus erythematosus. Our findings suggest that IFNs contribute to the heterogeneity of clinical manifestations in SLE, and measuring circulating IFNs could assist in designing clinical trials with therapies targeting IFN pathways. PubMed, Arthritis Res Ther, 2019 Apr 29;21(1):107. (Also see Diagnosis of Lupus) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  21. 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 06/09/2019.
  22. Validation of the REVEAL Prognostic Equation and Risk Score Calculator in Incident Systemic Sclerosis-Associated Pulmonary Arterial Hypertension. In predicting one–year survival in newly diagnosed SSc–PAH, the REVEAL prognostic equation and risk score provide very good discrimination but poor calibration. PubMed, Arthritis Rheumatol, 05/08/2019. (Also see Prognosis of Pulmonary Hypertension) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. Healthy maybe, but whilst I enjoy both in moderation, neither are so good for my GERD.
  24. Are Onions and Garlic Healthy? Here's What Experts Say. Garlic and onions are staples for many home cooks, but although they may not look like nutritional powerhouses, experts say they are. Time Healthland, 05/22/2019. (Also see Food Guide for Autoimmune Disease and Illnesses) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  25. 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 06/07/2019.
  26. T cell receptor β repertoires (TCR) as novel diagnostic markers for systemic lupus erythematosus and rheumatoid arthritis. These characteristics of the TCR repertoire can potentially serve as biomarkers and provide novel insights for disease status and therapeutical targets in autoimmune diseases. PubMed, Ann rheumatologist Dis, 05/17/2019. (Also see Diagnosis of Lupus and Diagnosis of Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  27. Patients with scleroderma require 'annual screening' for pulmonary arterial hypertension. Every patient with systemic sclerosis should be screened for pulmonary arterial hypertension every year, as early recognition, referral and aggressive treatment are necessary to improve long–term outcomes, according to Virginia Steen, MD. Healio Rheumatology, 05/22/2019. (Also see Pulmonary Hypertension Diagnosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  28. The International Scleroderma Network thanks United Therapeutics for their sponsorship support. Posted 06/06/2019.
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