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  3. Cardiac magnetic resonance predicts ventricular arrhythmias in scleroderma (SSc): the Scleroderma Arrhythmia Clinical Utility Study (SanCtUS). Ventricular function, oedema (T2 ratio) and %late gadolinium enhancement had the greatest utility as independent predictors of rhythm disturbances in SSc patients. PubMed, Rheumatology (Oxford), 11/25/2019. (Also see Complications with 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.
  4. The International Scleroderma Network thanks Genentech for their sponsorship support. Posted 01/21/2020.
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  6. FDA approves fish-oil drug for cutting cardiac risks. U.S. regulators approved expanded use of a fish oil-based drug for preventing serious heart complications in high-risk patients already taking cholesterol-lowering pills. NBC Health News, 12/13/2019. (Also see Complications with Heart Involvement and Supplement Guide) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. Hi! I just experienced almost two weeks of flu with fever, and I have the impression that my symptoms from systemic sclerosis became much worse during my disease. It does make sense in a way, but I just wanted to check if anyone else recognized this. Since I started with Plaquenil in the beginning of November my fingers and hands were much better, initially I had problems with Carpal tunnel symptoms and numbness/swelling of my fingers in the mornings. My doctor said it’s not due to regular Carpal tunnel symptoms, but to leakage of the small vessels causing numbness and swelling. During the flu everything became much worse, I even felt numbness of my arms and I could not feel almost anything in a couple of my toes. I hope things will go back to normal again once I’m well. Another thing I wonder is if there are others experiencing no or little sensation in toes. It’s not an entirely new symptom just much worse now than before. When I google I find out that Plaquenil belongs to Dmards and has an immune-modulatory effect, and where I live it is classified as immunosuppressant which entitles you to free of charge flu-shots. Nevertheless I got the flu and I know this can happen; that the shot does not offer 100% protection. But does anyone know if Plaquenil makes you more susceptible to infections in general? Or is it just in theory? Thanks!
  8. Successful treatment with hydroxychloroquine for systemic lupus erythematosus with cutaneous involvement accompanied by a xanthomatous reaction. As yet unrecognized factors may play a role in the development of a xanthomatous reaction in discoid lupus erythematosus. PubMed, Lupus, 2019 Dec 1:961203319890677. (Also see Treatments for Lupus) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. Fat Grafting for the Treatment of Scleroderma. Fat grafting in scleroderma patients likely improves skin manifestations by recreating fullness, correcting contour deformities, and improving skin quality. PubMed, Plast Reconstr Surg, 2019 Dec;144(6):1498-1507. (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.
  10. The Hidden Drug Epidemic Among Older People. People in their 60s take an average of 15 prescription drugs a year and combined with over-the-counter products, they may do more harm than good. New York Times, 12/16/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. Systemic lupus erythematosus (SLE) is a risk factor for atrial fibrillation (AF): a nationwide, population-based study. Development of AF in patients with SLE was associated with increased mortality. PubMed, Clin Exp Rheumatol, 2019 Nov-Dec;37(6):1019-1025. (Also see Symptoms and Complications of Lupus) 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 Jack and Elizabeth Lewis for their monthly pledge support! Posted 01/16/2020.
  13. Hi CyberSamurai, Although the specialist in Dimarzio's link isn't on our list of scleroderma experts, he does specialise in connective tissue diseases. Ideally we do recommend listed specialists, but unfortunately, if there is no one available to you, then then it's probably worth you consulting the very best rheumatologist you can find. Kind regards,
  14. Can I suggest this guy? Depending on where you live in Wales, Bristol may not be too far: https://www.nbt.nhs.uk/our-services/a-z-consultants/dr-harsha-gunawardena
  15. Cantargia Selects CAN10 as Development Project in Systemic Sclerosis and Myocarditis. Cantargia develops antibody-based pharmaceuticals against the interleukin 1 receptor accessory protein (IL1RAP) and the project will focus on unmet medical need in systemic sclerosis and myocarditis. PR Newswire, 12/05/2019. (Also see Interleukins) 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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  17. The More Processed Foods You Eat, the Higher Your Diabetes Risk. Ultraprocessed foods were tied to a higher risk of Type 2 diabetes. New York Times, 12/18/2019. (Also see Prevention of Diabetes) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  18. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 01/14/2020.
  19. Effect of systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) on sudden sensorineural hearing loss (SSNHL). Comorbid SLE or RA may negatively affect the prognosis of SSNHL. PubMed, Laryngoscope, 12/04/2019. (Also see Symptoms and Complications of Lupus,Symptoms and Complications of Rheumatoid Arthritis and Autoimmune Ear Diseases) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  20. Hi Merve, Welcome to these forums! I'm sorry to hear that you have positive blood test results and are experiencing worrying symptoms. Regarding your blood tests, please see our sticky on the subject. Scleroderma is a very difficult disease to diagnose correctly and we have had other members who have received the same advice from their consultant - I.e. wait and see how the disease progresses. Of course, it is quite worrying for you, particularly as a medical student (a little knowledge can be a dangerous thing ) and whilst the symptoms you describe could relate to scleroderma, they could equally be due to some other health problem. Please note I have no medical training, but my suggestion to you would be the same as your rheumatologist - to try not to be too concerned at this stage. It's impossible to compare your symptoms with anyone else, as this disease affects everyone differently and therefore without the benefit of second sight, it's impossible to know the future prognosis. Kind regards,
  21. Hi CyberSamurai, I'm afraid we don't have a list of scleroderma experts in Wales; although having said that, I don't believe that there's any reason why your wife couldn't go to an English specialist. I would imagine she would need a referral from your Welsh general practitioner, though, which could possibly be problematic. The best thing (in my opinion) would be to approach him/her and see the reaction. Kind regards,
  22. Hi Joelf. Thank you for your response. I did take a look at that directory but the doctors are all in England and we live in Wales. 1. Is it possible to be treated by a specialist in England if you live in Wales? 2. Is there a similar list for specialists operating in Wales?
  23. Hello, I really hope that you guys can help me a bit with following problem: One year ago I went to my rheumatologist because I had stiffness in my fingers and pain (in the morning and also in the night). It always gets worse in summer when It gets warmer (it is somehow also linked to sweating). There were days when I could barely write because my hands felt puffy, started to sweat a lot and were extremely stiff. My doctor found out that I have scl 70 antibodies, my ANAs have been always negative (I do regular check ups), no rheumatoid factor, all other Blood values are good. My doctor said that he doesn’t believe I have scleroderma but I am not imagining to have pain and the stiffness; when I am stressed or did a lot of physical activity the pain and stiffness spreads to my feet. I have the symptoms of my hands for 4 years now and nobody seems to understand it or is willing to help. I am a medical student so I did a bit of research and found out that scl 70 is mostly specific for the diffuser type, I went to a lot of doctors and got my organs checked, everything is fine until now, I don’t have lung involvement, my heart is fine (apart from a mild congenital regurgitation) and I do not have Raynaud's syndrome (I did a capillary bed examination). My rheumatologist said that I should not worry and he doesn’t want me to come again because, as I said, he doesn’t believe I have scleroderma. I am really worried and afraid. Even though I am mostly fine and "just“ have the symptoms of my hands, I worry that soon it might get worse and affect my organs.. well, sooner or later it will because I have the antibodies. My question is if I should do regular check ups of my organs (each year) and if some of you have had similar symptoms at the beginning and how long it took in your case until the disease spread? Oh and I have hashimotos disease, I don’t know if that’s relevant. Thanks in advance
  24. Haemodynamic phenotypes and survival in patients with systemic sclerosis: the impact of the new definition of pulmonary arterial hypertension (PAH). The data of this study show that a pulmonary vascular resistance threshold ≽3 WU is too high to enable an early diagnosis of PAH. PubMed, Ann rheumatologist Dis, 12/09/2019. (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.
  25. The International Scleroderma Network thanks Network for Good donors for their support! Posted 01/12/2020.
  26. Hi TestTube, Welcome to these forums! I'm sorry that your wife has been diagnosed with Eosinophilic Fasciitis and morphea. Due to the seriousness and rareness of these diseases, I'm assuming that she is being treated by a listed scleroderma expert; if not, then I would suggest that she does consult one, as these two diseases are very difficult to treat and require specialist knowledge and expertise. Methotrexate is used quite commonly for scleroderma (as are other immunosuppressants.) Please note I have no medical training and so therefore the best person to advise you about the correct medication is a scleroderma expert, or failing that, the very best rheumatologist you can find. Kind regards,
  27. My wife is 42 years old and was diagnosed with Eosinophilic Fasciitis (EF) two years ago. She was given methylprednisolone (medrol) 4mg for about 10 months. That was terrible. Her feet and legs are still scarred from the EF which also attached the backs of her hands and wrists. Her legs were affected the most. Since going off medrol, she’s been battling joint and muscle pain. But her eosinophil count has been normal at least. She doesn’t have any antibodies for arthritis; RF factor test was negative. She’s been off medrol for over a year but got localized scleroderma / morphea on both of her breasts in the past few months along with red swollen knuckles and extreme joint pain around the same time. A dermatologist did a biopsy of her breasts and confirmed morphea. She used a topical steroid ointment but it did not help much. She has one other autoimmune disease (Hashimoto’s) and her thyroid peroxidase (TPO) and thyroglobulin (TG) antibodies have always been very high. She also has a micro deletion at 22q11.2 and therefore has a slightly low T cell count due to thymus hypoplasia. She is afraid to take methotrexate because of a slight risk of lung cancer and because she takes synthroid (also associated with a slight increased risk of lung cancer) and a couple other factors, she is just too scared to take methotrexate. But it is looking like she doesn’t have a choice, does she? Should her doctors perform any other testing and should they be looking for some underlying disease or cancer, or is this likely just all autoimmune related? Are there any good alternatives to methotrexate? Also what do you think of the coexistence of EF and morphea? Does that mean anything? Also an interesting observation for any researchers who come across this; she was also taking T3 (Cytomel) 5mcg and Synthroid 100mcg for years prior to getting EF, but her adrenals were not functioning properly and that was never addressed with anything like Cortef, although I think it should have been (not sure if that was cause or effect), but her cortisol was low-normal (sometimes flagged low) prior to coming down with EF (her eosinophil count was fine while her cortisol was low-norm, and then her eosinophil count shot up and then the EF started up on her legs and feet). We have tons of lab tests prior to and after she got sick. Also prior to EF, she was exposed to thousands of cats at a conference (we went to CatCon in LA in August 2016) and she got sick right after that (September & October, 2016). Her Bartonella titer was 1:256. Not sure if that has anything to do with all this, but it was merely two weeks later when her eosinophil count went from normal to very elevated (1800 or so, practically hypereosinophillia). Thanks for any advice or pointers.
  28. Motor neurone disease 'linked to cholesterol' Scientists say they have discovered a possible underlying cause of the neurological disorder, motor neurone disease (MND). BBC News, 12/18/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  29. Novel biomarkers containing citrullinated peptides for diagnosis of systemic lupus erythematosus (SLE) using protein microarrays. A citrullinated/non-citrullinated peptide panel is a valuable diagnostic marker of SLE, even for patients who are negative for anti-Smith, anti-double-stranded DNA, and anticardiolipin. PubMed, Clin Exp Rheumatol, 2019 Nov-Dec;37(6):929-936. (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.
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