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Found 65 results

  1. Incidental significant arrhythmia in scleroderma (SSc) associates with cardiac magnetic resonance measure of fibrosis and hs-TnI and NT-proBNP. This first implantable loop recorder study identified potentially life–threatening arrhythmias in asymptomatic SSc patients attributable to a primary SSc heart disease. PubMed, Rheumatology (Oxford), 01/28/2019. (Also see Complications with SSc Heart Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. My name is Blair. In June of 2018 my daughter, who was seven years old at the time, was diagnosed with En coup de Sabre and has been on treatment since. Upon doing my own research, I have found that there is a possible link between silicone breast implants and auto immune diseases such as Scleroderma. I am wondering now because I have silicone breast implants and breast fed my daughter when she was a baby if there is any sort of connection between the two. Just reaching out to see if anyone else has this situation.
  3. New Computer–based Analysis Method Identifies Scleroderma Patients Who May Benefit Most from Stem Cell Transplant. The analysis of gene profile in blood samples may help identify scleroderma patients who could benefit most from stem cell transplant, a research study suggests. Scleroderma News, 11/01/2018. (Also see Stem Cell (Bone Marrow) Transplantation) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  4. Skin Cancer and Other Skin Complications for People with Scleroderma. The skin is the largest organ in the body and is affected in most scleroderma patients. Scleroderma News, 11/07/2018. (Also see Cancer and Scleroderma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. CCN proteins as potential actionable targets in scleroderma (SSc). We discuss the possible implication of CCN proteins in SSc pathogenesis, with a special focus on skin features, and identify the potential actionable CCN targets. PubMed, Exp Dermatol, 10/17/2018. (Also see Causes of Scleroderma and Skin Fibrosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  6. Case Report: Parry-Romberg syndrome (PRS) in a patient with scleroderma. A clinical diagnosis of PRS was made due to be followed up by dermatology, rheumatology and maxillofacial surgery with the aim of reconstructive surgery once symptoms stabilise. BMJ Case Reports. (Also see Parry Rombergs Syndrome) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. Case Report: Surgical management of raised intra–ocular tension in the hostile ocular surface – recurrent tube erosion in a patient with systemic sclerosis. In patients with systemic disease such as scleroderma, pre–operative immunosuppression helps to reduce the of erosion in difficult cases. PubMed, BMC Ophthalmol. (Also see Eye Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. Mimetics of systemic sclerosis (SSc). An early differential diagnostic distinction between SSc and other sclerosing diseases is important due to SSc–associated and potentially life–threatening systemic organ involvement. PubMed, Z Rheumatol, 09/25/2018. (Also see Difficult Diagnosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. Serum biomarker for diagnostic evaluation of pulmonary arterial hypertension in systemic sclerosis (SSc–PAH). The combination of Midkine and Follistatin-like 3 can serve as an SSc–PAH biomarker and are potential drug targets for this rare disease population. PubMed, Arthritis Res Ther, 2018 Aug 16;20(1):185. (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.
  10. Characteristics and Outcomes of Patients With Systemic Sclerosis (Scleroderma) Requiring Renal Replacement Therapy in Europe. Patients with scleroderma had a higher rate of recovery from renal replacement therapy dependence than controls. PubMed, Am J Kidney Dis, 08/16/2018. (Also see Kidney (Renal) Dialysis and Transplant) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. Evolving symptoms of Raynaud's phenomenon (RP) in systemic sclerosis (SSc) are associated with physician and patient–reported assessments of disease severity. Patients identify with distinct patterns of SSc–RP that may relate to progression of the obliterative microangiopathy of SSc. PubMed, Arthritis Care Res (Hoboken), 08/21/2018. (Also see Raynaud's Phenomenon) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  12. TLR4-dependent fibroblast activation drives persistent organ fibrosis in skin and lung. The results suggest that systemic scleroderma patients with high TLR4 activity might show optimal therapeutic response to selective inhibitors of MD2/TLR4 complex formation. PubMed, JCI Insight, 2018 Jul 12;3(13). (Also see Fibroblasts, Skin Fibrosis and Pulmonary Fibrosis Research) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. Insights into myofibroblasts and their activation in scleroderma: opportunities for therapy? This review outlines the increasing complexity of the biological processes that leads to the appearance of the myofibroblast in normal functions and in diseased tissues. PubMed, Curr Opin Rheumatol, 07/31/2018. (Also see Fibroblasts) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  14. Skin resident memory T cell population is not effectively constructed in systemic sclerosis. Regarding the contribution of circulating T cells, over–production of IL-13 by circulating effector/memory T cells is reported to be critical for more severe cutaneous disease. PubMed, Br J Dermatol, 08/18/2018. (Also see 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.
  15. I have today been diagnosed with systematic (I believe) scleroderma, blood test confirming 99% positive. Bit of a pain, as I already have, confirmed last week, emphysema and pulmonary fibrosis. Seems all these diseases are coming from the same source, my workplace, finished doing that job 25 years ago. Undergoing another battery of tests, MRI, Xrays of hands, heart scan and a capillaroscopy, whatever that is. Bit overwhelmed by all this.
  16. It seems like every three months when I go to one or more doctors they come up with something new. On Wednesday I went to the memory neurologist, he did a MRI of my brain and it scared me. After the MRI we now know what is causing the memory problems, the falls and not being able to come up with a word that I just can't get out . I have what is called (small vessel ischemic disease) and I found that it is mini strokes; as I understand at this is not a major problem (yet) and after the blood test at the last visit I found out I have kidney problems and my thyroid is under active. I don't want to go to Omaha any more, but all the test and MRI and x-rays are giving me some peace of mind. Some people think I'm crazy by saying now I know because I am like most people; I have a distorted imagination about what the tests are for and I am going to die today or wake up with tubes coming out of every orifice and some that are just there. I had to learn to laugh and not give up which I have done at times; the only thing about that is now I get to clean up the mess. I hope others keep their heads on straight.
  17. Association of serum homocysteine level and lung involvement in systemic sclerosis (SSc). It seems that the serum level of homocystein has a minor role in the lung involvement of SSc patients or its effects are modified by other factors. PubMed, Curr Rheumatol Rev, 06/28/2018. (Also see Pulmonary Fibrosis Disease Correlations) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  18. I had a few bad weeks; well a few bad months. I just wanted to get away. Sometimes it gets hard owning a house; so far things are starting to look up. I've been having memory trouble; I saw a memory neural specialist and I am having an MRI of my brain next week. I had severe head injuries, the last being the worst. I am still not sure what happened, although I was told what happened, which was in 2007 and I've been having a lot of headaches. I still have a dent in my head from it; I also broke my neck and nose and the company I was working for refused to let me go to a doctor. I was in Canada at the time. I don't remember most of the trip home but I must of made it. I was a solo flatbed driver. Sorry for the rant I will let everyone know what they find or don't find. I had a nice settlement, but it was not worth the pain and suffering I have every day. Some of the doctors think the scleroderma is from the fracture in my forehead. I just wish I could go back to work.
  19. Case Report: Bladder Malakoplakia in Systemic Sclerosis Patient. This is the first case report of malakoplakia in a systemic sclerosis patient. PubMed, J Endourol Case Rep. (Also see Interstitial Cystitis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  20. Smoking in Systemic Sclerosis (SSc): a Longitudinal European Scleroderma Trials and Research Group Study. The known adverse effect of smoking on bronchial airways and alveoli is observed in SSc patients, but not on the progression of SSc–specific pulmonary or cutaneous manifestations. PubMed, Arthritis Rheumatol, 05/21/2018. (Also see Preventive Care for Pulmonary Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  21. Hearing loss in patients with scleroderma (SSc): associations with clinical manifestations and capillaroscopy. Subjective and objective hearing loss were higher in patients with SSc compared to the control group and also sensorineural hearing loss, abnormal pure tone audiometry, and abnormal speech reception threshold. PubMed, Clin Rheumatol, 06/02/2018. (Also see Autoimmune Ear Diseases) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  22. Good morning, I was diagnosed at the age of 9 with Scleroderma/morphea with patches on both sides of my neck and below the neck on my collar bone. The spot on my collar bone was very thick and had a scar tissue appearance. A biopsy confirmed the diagnosis and I was treated with cortisone tape and Vitamin E for maybe 7 years. After a few years of using the cortisone tape, the front spot thinned out completely and remained a discolored mark on the skin. I am now 55 years old. For the past few years I had a small lump where the biopsy was done and it hurt when I touched it. My dermatologist removed it and I believe that it was a pre basal cell. My question is, should I be routinely following up regarding my scleroderma/morphea with anyone? Over the years when I have mentioned it to my primary care physician or dermatologist and they have said nothing. I definitely have some arthritis in some fingers, jaw, back, but always attributed to age. Could any of this be related to the scleroderma? Thanks much, Anne H
  23. Hi! I’m Amber 33 and new to the forum. My symptoms started with numbness and tingling in my hands and arms along with extreme stiffness and weakness in my hands. My doctors thought it was carpal tunnel but it didn’t make sense seeing how I had been a stay at home mom for ten years prior. Afterwards, my hands began to swell, my hip started becoming sore, I had this strange bruise type rash that wouldn’t go away down my leg, and my shoulders began keeping me up at night. My mother passed with leukemia around this time and things got even worse. My neck would pain me constantly and felt as though I couldn’t turn it. Like I had a constant crick in my neck. The rash also spread down to my calf and I began feeling a dip in my back side near the rash. My doctor sent me to a dermatologist and a rheumatologist. The dermatologist did a biopsy that came back as morphea or scleroderma. The rheumatologist told me that he thought it was morphea and an unspecified autoimmune. My ANA came back positive as well. He said I leaned more towards lupus then anything, but still didn’t hit some of the main characteristics of the disease. At first he put me on vitamin D and plaquenil but after a couple of months it had only gotten worse. He then decided to add methotrexate but also gave me a 6 week supply of prednisone that made every pain go away. It didn’t take away all of the swelling in my hands but I felt great. I had been given it once before for an upper respiratory infection and knew it would help and now that it has ended, I’m really not sure if the methotrexate has helped or if it’s just taken some time to slowly return since I discontinued the steroids. It’s been about three months since I quit the steroids and it’s just slowly gotten worse. The doctor seemed to think the methotrexate was helping, but that I needed to up the dose from 6 pills a week to 8. Then I received a call from them the next day saying my liver enzymes were elevated and that I needed to stay at 6 until my next visit in three months. I guess I’m just really looking for some advice on what to expect. Or to maybe find someone who has had a similar journey. I’m curious why they didn’t want me to lower my dosage if my liver enzymes were elevated. I don’t understand why he ruled out systemic scleroderma - not that I was hoping for that diagnosis by no means, but it seems possible. If I have to be taken off the methotrexate, what’s my next option? He said morphea can cause fat atrophy and he thinks that’s what's happened on my back side. Will that get worse? Why in this world are steroids so bad if they make you feel so good?! I’ve been dealing with this for about a year and a half now and I don’t really feel like I’ve made any great progress. Any advice would be very much appreciated.
  24. I am going to look for where a group of people lost a friend to lupus. On January 23rd they are have a bone marrow donation drive. I think that is a great thing and I saw the story on KTIV news station 4. I will look it up a little later.
  25. I know I should not worry about this blood test; most of the time I know what they are or should be. My vitamin D for the first time is normal. The one that is the most troublesome is my creatine kinase (CK) went from 36 to 78. This test was run to figure out why I am falling and why my legs feel as though I have walked 100 miles going down my hallway and back. I used to stand for a long period of time; they have started to hurt and want to go out from under me. If anyone has this problem I would appreciate to know what they did. I do have peripheral neuropathy in both legs and arms and my sclero doctor is considering that might be the problem. I just do not know why my CK would jump that much in a year. Thank you Quiltfairy
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