Jump to content
Sclero Forums

All Activity

This stream auto-updates     

  1. Yesterday
  2. Defining genetic risk factors for scleroderma-associated interstitial lung disease (SSc-ILD) : IRF5 and STAT4 gene variants are associated with scleroderma while STAT4 is protective against scleroderma-associated interstitial lung disease. Further work is required to understand the genetic basis of lung fibrosis in association with scleroderma. PubMed, Clin Rheumatol, 01/08/2020. (Also see Pulmonary Fibrosis Diagnosis and Genetics) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 02/16/2020.
  4. Hi Carol, Welcome to these forums! I'm very sorry to hear that you're experiencing such severe Raynaud's symptoms and the link I've included does have lots of tips about dealing with the problem. Although I do have Raynaud's, thankfully it doesn't affect me as badly as you describe. I have found that it's very important to keep my core body temperature warm, as this does affect the severity of the symptoms I experience. I would suggest that a few light layers of gloves would be more effective than thick woollen gloves, but unfortunately, gloves are not desperately practical when used for daily activities at home. Kind regards,
  5. I have severe Raynaud's with limited scleroderma. I really need some suggestions on what gloves to wear for inside use. Gloves that would keep hands warm and be practical enough for use with daily activities. I recently had to cut my visit short at my daughter's home because my fingers turned blue constantly, even wearing knitted gloves. Thank you for your support!
  6. Last week
  7. When Life Throws You Curveballs, Embrace the "New Normal". For patients with life-altering illnesses or anyone just getting older, it helps to roll with the punches and make the best of the here and now. New York Times, 01/20/2020. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. High Incidence of New-Onset Joint Pain in Patients on Fluoroquinolones as Antituberculous Treatment. There is a high incidence of joint pain in patients receiving antituberculous treatment, when fluoroquinolones are administered as compared to pyrazinamide. PubMed, Respiration, 2020 Jan 14:1-7. (Also see Extrapulmonary Tuberculosis) 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 02/14/2020.
  10. Hi Inibini, I can sympathise a bit, because in the beginning my hands were very painful and my fingers were very swollen. I spent an absolute fortune having all my rings made larger, only to have to have them altered again when, due to my taking prednisolone, my fingers went back down again. I had bilateral carpal tunnel syndrome and had successful operations on them; in my case the carpal tunnel was entirely due to having scleroderma, so I would imagine that the operation for carpal tunnel is the same for people with or without scleroderma. However, I have no medical training and so therefore this is just my opinion. The best person to advise you is your doctor/scleroderma expert. Kind regards,
  11. Case Report: Spontaneous bowel perforation in the setting of colonic involvement with scleroderma (SSc). It is essential that clinicians faced with abdominal symptoms and signs in patients affected by SSc are able to quickly differentiate acute visceral perforation from benign causes. PubMed, BMJ Case Rep. (Also see Bowel Dysfunction) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  12. Hi! I’m having more and more problems with my hands during night time; the problems come as two parts: swelling and numbness. The swelling is my fingers being swollen in the night and the morning, problem to make a fist. But does not hurt. The other part is numbness which is very much like carpal tunnel syndrome because my fingers get numb, mostly the little finger and the ring finger, just like the symptom picture for carpal tunnel. Sometimes also other fingers such as thumb and index. However, I have had this checked (because I keep waking up a lot!! And need to exercise my hands) and performed all sorts of physiological tests, but everything seems normal. So I’m thinking the mechanism might be different from the carpal tunnel people without SScl get. Could it be that the latter is due to vessel leakage and the former due to compression of nerve due to tightness of the tunnel from other reasons? I’m wondering because carpal tunnel surgery probably will not help me if the cause is different from regular carpal tunnel. No doctors seem to be able to provide an answer. Any experts out there? Theoretical or clinical? Kind Regards
  13. Cats and Risk of Schizophrenia. In the same study that found pet dogs reduce overall risk for schizophrenia, the researchers reported less positive news for cats. Healthy Living Magazine, January 2020. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  14. The International Scleroderma Network thanks Network for Good donors for their support! Posted 02/12/2020.
  15. B cell synovitis and clinical phenotypes in rheumatoid arthritis: relationship to disease stages and drug exposure. We demonstrate an ongoing B cell-rich synovitis in a larger proportion of patients with established RA that does not seem to be captured by standard clinimetric assessment. PubMed, Arthritis Rheumatol, 11/29/2019. (Also see Diagnosis of Rheumatoid Arthritis and B Cells and T Cells) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  16. Case Report: Autoimmune Hepatitis and Systemic Sclerosis: a Rare Association. Autoimmune hepatitis and systemic sclerosis may be associated, therefore patients with these diseases should be monitored closely. PubMed, Eur J Case Rep Intern Med. (Also see Liver and Spleen Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  17. 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 02/09/2020.
  18. Earlier
  19. Immune discovery 'may treat all cancer'. A newly-discovered part of our immune system could be harnessed to treat all cancers, say scientists. BBC Health News, 01/20/2020. (Also see Cancer) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  20. Negative regulation of dendritic cell (DC) activation in psoriasis mediated via CD100-Plexin-B2. Our results uncovered a negative regulatory mechanism for DCs activation in psoriasis, which was mediated via CD100-Plexin-B2 in a cell type- and receptor- specific manner. PubMed, J Pathol, 01/14/2020. (Also see Psoriasis and Psoriatic Arthritis and Dendritic Cells) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  21. 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 02/07/2020.
  22. Dipeptidylpeptidase 4 as a Marker of Activated Fibroblasts and a Potential Target for the Treatment of Fibrosis in Systemic Sclerosis (SSc). DPP-4 characterizes a population of activated fibroblasts and shows that DPP-4 regulates TGFβ-induced fibroblast activation in the fibrotic skin of SSc patients. PubMed, Arthritis Rheumatol, 2020 Jan;72(1):137-149. (Also see Fibroblasts) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. Call to tax 'hidden' sugar in pre-mixed alcoholic drinks. Many "ready to drink" pre-mixed spirits are packed with excessive sugar and hidden calories and should be subject to a sugar tax like fizzy drinks, health experts say. BBC Health News, 01/21/2020. (Also see Food Guide) 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 United Therapeutics for their sponsorship support. Posted 02/06/2020.
  25. Thank you for your response and opinion, I am on the UK waiting list for CBT Therapy in the South, that comes with a 4 month waiting list unfortunately but I am open to trying to resolve the anxiety side of things. I just can't shake that these symptoms are not scleroderma, I know how ignorant it sounds - but the wrinkly hands, raw finger tips, skin peeling, hands indenting easily and holding the indent for hours, lump and rashes are completely freaking me out. I understand google is not a doctor and will never replace a specialist, but having every symptom I find odd have the first or second result popping up as scleroderma is really, really getting to me.
  26. Depression and suicidality in psoriasis and clinical studies of brodalumab: a narrative review. Clinicians are urged to evaluate patients with psoriasis for psychiatric risk factors regardless of their therapy. PubMed, Cutis, 2019 Dec;104(6):361-365. (Also see Depression, Suicide Prevention and 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.
  27. Hi Katie, Welcome to these Forums! Whilst I can see that you're obviously concerned, the symptoms you describe could relate to any amount of health problems and not necessarily scleroderma, which is a rare and extremely complicated disease to diagnose and treat; certainly not something that you may think you "might" have, after putting a few symptoms into a search engine. Please note I have no medical training, but the fact that you appear to have had innumerable different medical tests, most of which appear to be negative, would lead me to the same conclusion as your doctor. Far more concerning is the amount of anxiety you're experiencing. One thing that is certain to exacerbate any illness is the stress involved in trying to find a diagnosis, as stress and anxiety can cause hormonal and cellular changes in our bodies which can lead to a variety of medical problems and is particularly damaging for autoimmune diseases. I would suggest that some of the symptoms with which you're suffering could be due to your anxiety and stress. Anxiety is a symptom that needs to be addressed and minimised when one is dealing with a chronic illness such as scleroderma or any other medical problem and as it's perfectly normal to experience depression and anxiety along with illness, it may be beneficial for you to ask your primary care doctor for a referral for counselling if you're finding that your health issues are difficult to deal with. Kind regards,
  28. Hi all, A huge worrier here. I am convinced I have scleroderma. My symptoms started in September. I am a 25 y.o female. I just felt unwell, had a bruised feeling in my ribs and vision had become blurry in one eye. I have since had rib and pelvic pain, trouble swallowing, digestive issues and most recently I am now experiencing unexplained raised rashes on legs, on/off rashes on other parts of my body with white blotchiness, red flat itchy spots on my hands, an all over feeling of being ‘sunburnt’, extremely watery eyes and I now have had joint aches on/off in my fingers though the aches seem to be going whilst the rashing is intensifying amongst a new, scary symptom: a skin toned lump on my middle finger, just below my nail on the side of my finger. What worries me most is that I am now linking symptoms I’ve ignored in the past to this disease. I have had a chronic cough for 6+ years that gets worse at night. I also have had calcium deposits develop on my two middle toes when I was 15 years old, I blamed tight shoes at the time. I have also dealt with cystitis-like symptoms on/off since a similar age, with no infection ever present - I’m now assuming it is likely interstitial cystitis. I have also had a head CT scan that revealed incidental dural calcification. No general practitioner is concerned re my symptoms and won't let me see a rheumatologist or dermatologist. I feel alone and scared, and can not afford to pay for this at the moment. I have had a lot of tests: - 2 Chest Xrays (clear) - Neck ultrasound/transvaginal ultrasound (clear) - CT of abdomen and pelvis (clear) - Upper gastroscopy (no problems found), gastro told me to get psychological help.. - Numerous bloodtests, all normal, including ANA/ENA that I got privately after doctors refused me them I still have an instinctive feeling something is wrong and I can’t shake it off. I don’t think I have obvious Raynaud's though my feet have always gone very mildly purple and tingly all my life but I have always had bad circulation and am very pale skinned. However, for 4 weeks now my hands have become pruney and wrinkled as if submerged in water and this never goes away, my finger tips also feel extremely raw and tender as if some skin has come away. There is tiny parts peeling and my skin in general is very dry, irritable and itchy. Whew, sorry about my long post, but these 5 months have been bad for me truly and I feel scared and alone. Everyone is blaming my symptoms on stress or atypical manifestations of health anxiety and whilst I agree I am anxious, I am showing real, visible symptoms but have accepted mental health therapy anyway as that is all the doctors keep providing. My main concerns are my rashes, itchy skin and wrinkly hands. Also the new lump that has appeared on my finger! Every time I convince myself that it might be something minor like allergies a new symptom appears further supporting my suspicion. I’m also concerned re the calcium deposits I have previously had on my toes (now left lumps) and the dural calcification found. My hands and feet are also always cold, though I have always dealt with this in the winter. I am just so frightened beyond words. What if my chronic cough is from lung damage and chest xrays can not see it? Does scleroderma cause visible damage to the oesophagus or the sensation/dysphagia? Could my itchy rashes on my body and flat itchy spots/wrinkly fingers be symptoms of scleroderma? Interstitial cystitis has been connected with auto immune diseases I believe. This new lump on my finger - hardening of skin?! I’m really afraid as you can tell. I have had two negative ANA blood tests, one in 2017 and one a few weeks ago. I also got ENA bloods done to test for scl70 in a panic, I wish I could find a way to get the ACA blood test done to look for the anti centimetre(?) antibody but this does not seem to be provided by any hospitals and no doctor will give me a referral. I know it is possible to have scleroderma with negative bloods.. agh! I just want to cry. My eyes are becoming more blurry and irritated, skin more irritable and the lumps and IC and being ignored by GPs is making me honestly lifeless. Any advice appreciated, I honestly just wanted to have an emotional rant as I can’t handle this anymore. Does this sound like sclero? Do most people live a long life with this disease as a whole? What steps forward do I take, do I trust GPs and ignore my symptoms? Thank you to anyone who has taken the time to read my worrisome-minded essay.
  1. Load more activity
×
×
  • Create New...