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  3. Hi Ashwin, Welcome to these forums! I'm sorry to hear that your mother has been diagnosed with CREST and is suffering with such unpleasant symptoms. 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 to advise her on the most effective treatment and management. I've included links to our medical pages on Gastrointestinal Involvement, Raynaud's, Telangiectasia and Anxiety and Attitude, which I hope you'll find helpful and informative. Kind regards,
  4. A multicenter randomized, double-blind, placebo-controlled pilot study to assess the efficacy and safety of riociguat in systemic sclerosis-associated digital ulcers (SSc-DU). In participants with SSc-DU, treatment with riociguat did not reduce the number of DU net burden compared with placebo at 16 weeks. PubMed, Arthritis Res Ther, 2019 Sep 3;21(1):202. (Also see Treatments for Digital Ulcers and Clinical Trials: Completed, Negative Results) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. Hi.. my 75 year old mum has been diagnosed with CREST syndrome since the last couple of years. Since 12 years, she was complaining of "I dont know what's happening to me" till she was diagnosed. At least now she knows it wasn't in her imagination! I was wondering if anyone else is having similar symptoms and if they have found relief in some way. Her symptoms are: - difficulty in swallowing. To an extent that since the last one year she can only have pureed food. - Since the time she stopped having solid food her weight has dropped by 10 kg. She's about 40 kg now. - No control over her bowels. She's had IBS since the last 15 years, and it got steadily worse. Now she doesn't leave the house. - Her balance is poor. She's not steady on her feet. - Her speech is muffled. She struggles to speak. A few months ago it became really bad and she could hardly say a word, but thankfully it's reversed a bit since then. - Her hands and feet get cold and blue. She can't take the cold anymore. - Her face has changed. She looks startled all the time. Also, she makes involuntary movements like mocking - She has tiny red spots on her face. - Her head bobs involuntarily. - She complains of a pulling sensation in her head. - She suffers from anxiety and insomnia I'd be grateful if anybody could offer some kind of advice to make her life more livable.
  6. Yesterday
  7. Thanks!! I don't know if I'll be able to live with this condition during some time. I'm so depressed because some person understand me. I knew like this have worsted my life and appearance during every these years. I'm sorry for this declaration, but I needed to write this in a place where the people understand about it.
  8. Diet report card: Americans still need to cut sugar, add healthy fat. Americans’ diets are a little less sweet and a little crunchier but there’s still too much sugar, white bread and artery-clogging fat, a study suggests. NBC Health News, 09/24/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. Hi Lepanto, Welcome to these forums! I'm sorry that you're suffering with en coup de sabre and are feeling depressed about it. There are a few treatments available, including UVA1 treatment and I've found another thread En Coupe De Sabre, which may be of interest to you and which you may find helpful. Kind regards,
  10. Last week
  11. Hi everybody, I've read this forum for very long time. I'm from Chile and I've got scleroderma ( en coup de Sabre ). During some years ago I saw in my forehead ( precisely 5 years ago ) a lesion and now it's become much worse. I went a dermatologist and I didn't know anything about it. I'm very depressed and try not to think about it, but it is very complicated. In my life I've only known 2 people with the same disease. I'll show us some photos of my lesions. Photo 1 Photo 2 Photo 3
  12. Hi Aloneinaforest, Welcome to these forums! I'm sorry to hear that your wife has had worrying symptoms and positive blood tests. Please note I have no medical training and whilst I can understand your concern regarding the likelihood of her having scleroderma, obviously it's not possible for me to allay all your fears at this stage. The symptoms you describe could relate to any number of health problems, including scleroderma, which is an extremely difficult disease to diagnose correctly, not least because it affects all sufferers differently (as does lupus!) It is possible to have the disease without necessarily getting all the worst symptoms of it. However, I can say (having scleroderma with lung involvement myself) should your wife find that after the results of her tests and chest xray that she does in fact have scleroderma, it's not necessarily the end of everything for her. At this early stage, I advise that you keep a positive attitude until you find out exactly what her prognosis will be; not every case of scleroderma is a death sentence. 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,
  13. Musculoskeletal ultrasound can improve referrals from dermatology to rheumatology for patients with psoriasis. Due to the high frequency of non-specific pain in psoriasis, it is not possible for every psoriasis patient with joint pain to be assessed by a rheumatologist. PubMed, Br J Dermatol, 09/10/2019. (Also see Psoriasis and Psoriatic Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  14. Hi Everyone, This thread has really helped me take a deep breath and stay calm about my wife's recent positive ANA / SCL-70 blood work. Her hair had been thinning over the past few months along with moderate unexplained weight gain and we suspected (still suspect) some sort of hypothyroidism. When we got the positive ANA / SCL-70 results we researched diffuse scleroderma - needless to say it has been a very hard few days. We are still waiting to see a rheumatologist so the blood work is all we have to go on at the moment. The confusion and ray of hope I'm currently clinging to is the fact she has no symptoms of scleroderma. No skin thickening, no abnormal joint pain - nothing tangible to say 'yeah this is what I have'. Obviously the lung / heart involvement is what scares me the most - those tests can't come soon enough. I'm wondering though - is it possible to have no outward symptoms, no symptoms related to lung involvement (fatigue, shortness of breath, etc.) and still have scleroderma? I've read the sticky about the conclusiveness of blood-tests as well as everyone's experiences they've posted here, and it seems like my wife is in that category, but I'm still bracing to find out there's some terrible surprise to be revealed by a chest x-ray or ECG. How have I gotten to the point where I'm almost hoping it's really Lupus? Thanks for reading my stressed out plea for hope.
  15. Ethnic Variations in Systemic Sclerosis (SSc) Disease Manifestations, Internal Organ Involvement, and Mortality. Ethnic variations in some SSc disease manifestations are observed, but this does not result in significant differences in short-term survival but may affect long-term survival. PubMed, J Rheumatol, 2019 Sep;46(9):1103-1108. (Also see Ethnicity, Race and Geographical Regions) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  16. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 10/16/2019.
  17. When Depression Is Like a Cancer. Just as cancer may go into remission but still kill in the end, depression is a chronic disease that may ultimately prove fatal even with state-of-the-art care and resources. New York Times, 09/26/2019. (Also see Cancer and Depression) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  18. Hello all, I took the plunge and made an appointment with the Doctor who has subspecialty of Scleroderma which was listed here. I have to wait until February to see him. I decided that this is my body, I need to learn as much as possible about this disease. I really need to know we're heading in the right direction with all these meds. The specialists I see, causes me to question my treatment. Pulmonologist I saw last month, she came from John Hopkins and has worked with scleroderma patients previously. She said to me, that she has seen Cellcept used on those with lung involvement. Not for joint and muscle issues. She told me to take advantage of having a Doctor in the system who has scleroderma as his subspecialty. This prompted me to make the appointment. Saw the ophthalmologist, he told me exudate is from my diabetes. Although my retina scan was much better. Go figure? He was no help on what might help me get my contacts in daily since the tightness around my eyes has become more advanced. I know many of you are suffering more than I am. I'm just wondering if any of you had rapid changes or has this been a slow progress of the disease? I feel like so much is happening quickly in the past year of body changes. Raynauds, calcinosis, sclerodactyly, acid reflux, newly found telangiectasia. Along with the muscle and joint pain.
  19. Emerging therapies in rheumatoid arthritis (RA): focus on monoclonal antibodies. Advances in the treatment of RA are attributed to several aspects such as new classification criteria as well as better understanding of the pathogenesis of RA. PubMed, F1000Res, 2019 Aug 30;8. (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.
  20. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 10/14/2019.
  21. Health-related quality of life (HRQoL) in systemic sclerosis (SSc) before and after autologous haematopoietic stem cell transplant (AHSCT) - a systematic review. AHSCT in severe SSc patients is associated with significant and durable improvement in physical HRQoL. PubMed, Rheumatology (Oxford), 08/27/2019. (Also see Stem Cell Transplantation and Quality of Life) 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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  23. How an Ice Bath May Undermine Your Weight Workout. Soaking in icy water after lifting weights can change how muscle tissues reply to the exercise and end in much less muscle progress than doing nothing to get well. LightlyNews.com, 09/25/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  24. The International Scleroderma Network thanks Network for Good donors for their support! Posted 10/12/2019.
  25. Clinical Insights into Diffuse Alveolar Hemorrhage (DAH) in Antiphospholipid Syndrome (APS). DAH is a rare but devastating manifestation of APS patients with or without other systemic autoimmune diseases. PubMed, Curr Rheumatol Rep, 2019 Sep 6;21(10):56. (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.
  26. One site I get good information on most medical issues is WebMD. It has given me the best information on most things medical. Good luck with your search and it has photos of conditions.
  27. Case Report: Total gastrectomy in systemic scleroderma when anti-reflux surgery is not viable. We suggest an open gastrectomy with roux-en-Y anastomosis as an alternative to the Nissen fundoplication for patients with connective tissue disease. PubMed, Int J Surg Case Rep. (Also see Reflux (Heartburn) Prevention and Treatments) 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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