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  2. Vasodilators and low-dose acetylsalicylic acid (ASA) are associated with a lower incidence of distinct primary myocardial disease manifestations in systemic sclerosis: results of the DeSScipher inception cohort study. The present study might suggest a preventative effect on the occurrence of distinct myocardial manifestations by vasodilator therapy and low-dose ASA. PubMed, Ann rheumatologist Dis, 08/07/2019. (Also see Treatments for Systemic Scleroderma Heart Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Hi Quiltfairy, So sorry that you've developed yet another unpleasant symptom. Thankfully, I've not experienced this myself, but I've included a link to our medical page on Itching (Pruritus), which I hope might be helpful to you. Just a thought, but I wonder if you've changed anything like soap powder, shower gel or something like that, which might possibly have set off an allergic reaction and caused the skin on your hands to peel and itch? Best wishes,
  4. Last week
  5. My fingers have started to peel around my finger tips; they are not sore or itchy, but they feel a little funny. It is hard to explain, although at times I get a tingling or pin pricking on them. I hope some one can let me know what is causing this. Thanks.
  6. Arthritis group offers first guidelines for patients who use cannabidiol (CBD) for joint pain. The Arthritis Foundation released guidelines for people who want to try CBD — the first such guidance on using the cannabis-derived ingredient from any major patient advocacy group. NBC Health News, 09/24/2019. (Also see Endocannabinoid System) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. The International Scleroderma Network thanks Genentech for their sponsorship support. Posted 10/21/2019.
  8. Hi Omer, Welcome to these forums! I'm sorry to hear that you've had worrying blood test results. For information about blood test results, please see our sticky here. Anti-sm positive antibodies can be an indication of lupus; however, any queries regarding your blood tests should be directed to your rheumatologist, as he is the best person to advise you about them. Kind regards,
  9. Hi all, I'm fairly young, 23 years old . I DO NOT have scleroderma, but I had blood work done a few months ago when I got nerve like shooting pains down my arms and legs while studying for exams my last year of university. Here were my results : ANA positive at 1:320 ; Diffuse/homogenous pattern and Anti-Smith Positive at 1.3. I think these weird symptoms were mostly due to stress because my best friend had died from leukemia and just 1 week later, my aunt died as well. This took a toll on me and I was very depressed and stressed. I know stress is highly correlated to the immune system. My primary doctor said I should see a rheumatologist , so I went to see my mom's rheumatologist (my mom does have fibromyalgia and celiac disease). My rheumatologist said not to worry as I don't even show signs like Raynauds, etc. My question is, how worried should I be? I'm fairly healthy, I run a lot (not so recently however due to busy life) and I also maintain a healthful diet.
  10. The association between lymphopenia and serious infection (SI) risk in rheumatoid arthritis (RA). Lymphocyte counts below 1.0 × 109 cells/l were associated with higher SI risk in RA patients and may be used as a measure to stratify patients at risk of SI. PubMed, Rheumatology (Oxford), 08/27/2019. (Also see Symptoms and Complications of Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. Hi Ashwin, Some of your Mum's symptoms don't sound like Crest at all. The swallowing and coldness, yes. Either there is something else at play (not yet diagnosed) or maybe reactions to medication being taken. Unfortunately, because the professionals do not investigate thoroughly or simply can't make a correct diagnosis, they put it down to anxiety or imagination. In my case, the mental health tablets they put me on caused 70% of my symptoms until I refused to take them any more. Whatever it is, I do hope she is able to find some relief from it one way or another. Dimarzio.
  12. 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,
  13. 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.
  14. 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.
  15. 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.
  16. 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.
  17. 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,
  18. 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
  19. 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,
  20. 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.
  21. 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.
  22. 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.
  23. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 10/16/2019.
  24. Earlier
  25. 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.
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