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  1. Today
  2. Abatacept in Early Diffuse Cutaneous Systemic Sclerosis – Results of a Phase 2 Investigator-Initiated, Multicenter, Double-Blind Randomized Placebo-Controlled Trial. In this Phase 2 trial, abatacept was well tolerated, but change in modified Rodnan skin score was not statistically significant. PubMed, Arthritis Rheumatol, 07/24/2019. (Also see Biologic Agents) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Yesterday
  4. Owning a dog can help your heart, study finds. According to a new study published by Mayo Clinic, people who own pets, but especially dogs, are more likely to have better heart health. GMA Wellness, 08/23/2019. (Also see Pain Management) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. The International Scleroderma Network thanks Genentech for their sponsorship support. Posted 09/21/2019.
  6. Last week
  7. Tocilizumab and the Risk of Cardiovascular Disease (CVD): Direct Comparison Among Biologic Disease-Modifying Antirheumatic Drugs for Rheumatoid Arthritis (RA) Patients. Tocilizumab was associated with a CVD risk comparable to that for etanercept as well as a number of other biologics used for the treatment of RA. PubMed, Arthritis Care Res (Hoboken), 2019 Aug;71(8):1004-1018. (Also see Treatments for Rheumatoid Arthritis and Clinical Trials) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. Performance of a new quantitative computed tomography index for interstitial lung disease (ILD) assessment in systemic sclerosis (SSc). This new composite CT index for SSc-ILD assessment could be sufficiently sensitive for capturing early lung density changes in visually ILD-free patients. PubMed, Sci Rep, 2019 Jul 1;9(1):9468. (Also see Pulmonary Fibrosis Diagnosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. Hi Daughter Ang, The type of interstitial lung disease (ILD) I have is called non specific interstitial pneumonia (NSIP), which, if you've going to get pulmonary fibrosis, is the best sort to have! The reason is that it is a fibrosing organising pneumonia which is reversible if caught early enough. Thankfully, as I was extremely fit at the time, I noticed straightaway that I had breathing problems which I shouldn't have had. I went to my general practitioner who was on the ball and after a chest X-ray she referred me to a local lung consultant (who was also on the ball) and she referred me to The Royal Brompton Hospital ( which is a top lung specialist hospital). They did every lung test known to man on me and then I had six months treatment with a rather unpleasant, but effective, drug called cyclophosphamide. I was then put on an immunosuppressant and steroids and have been on them ever since (although I'm now in the process of weaning them down with a view to coming off them completely.) I would emphasise that each case of ILD is different and so is the treatment, so the fact that your mother isn't actually receiving any treatment at this time isn't necessarily a problem. The reason I had such aggressive treatment was because a) it was reversible if caught early enough and b) the inflammation was galloping on in my case and they were afraid that it would become permanent fibrosis and therefore untreatable, if not dealt with quickly. I also had lots of other symptoms which at the time I hadn't realised were scleroderma, but I was also referred to The Royal Free Hospital, where they are top scleroderma experts, so all in all I have been very lucky. Kind regards,
  10. Becky, I am sorry to hear you are having a hard time. My best advice is to not give up on finding someone to see you. I have had this same problem where I am at. I was told because I didn’t show the clinical signs that they would not see me. It took calling several offices before finding one that would just sit down with me and explain what was going on. I have been back since I started having other skin issues come up and I am still in the wait and see, as I am not showing the classic signs. I am waiting to get different insurance in order to go to one of the recommended specialist on here. I am lucky enough that I have actually made contact with someone who has scleroderma in my area and was told that the doctor in Denver was leaving and that the clinic in Arizona is taking new patients again. It has been very helpful finding someone to talk to face to face with. All the advice on here is very helpful. I have been my own advocate and looking into the tests that need to be done and have asked my primary care doctor who has been willing to get the tests done and everything so far has come back okay. Although some of the tests are not available either. It can take a long time to get a diagnosis and that has been the hardest part so far. Hugs. Hang in there and don’t give up. I hope this helps you some.
  11. Hello Joelf, Thank you so much for the response, it is very reassuring to hear your experience. Congratulations on your recovery ! I am more hopeful now after the initial shock dies down. Do you mind if I ask what kind of lung involvement you had, and what treatment was received ? My mom is suspected to have scarring and the doctor said, if she has no symptoms, then they won't offer any treatment yet. I'm not sure how I feel about this because I feel like she should get her current state stabilized so she won't develop any symptom, instead of getting treatment only when symptoms surface (because that will affect her quality of life). What are you thoughts about this ? I'd love to hear you or any one else's experience. Thank you so much again !
  12. Hi Daughter Ang, I'm sorry, your Mum has been having problems and would echo Jo's post on the subject. However, I would like to add (from personal experience), that plain water gives limited help to swallowing problems. I found salt water a little more helpful, but you can buy artificial saliva which is even better. A narrowed oesophagus can be stretched, though my lack of salivation resulted from mis prescribed antidepressants and stopped after I refused to take them any more. So I am wondering whether she is taking medication where a dry mouth is a side effect. Hope this is of help Dimarzio.
  13. Social media is harmful to teen girls’ mental health: What you should know. Teenage girls are affected by social media use more than boys, with the harmful effects being driven by three factors, according to a new study. GMA Wellness, 08/14/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  14. Hi Becky, Welcome to these forums! In answer to your query, scleroderma is a complex and difficult to diagnose disease and there are only a few specialists who have the knowledge and expertise to deal with it. I've included a link to our listed scleroderma experts. Regarding your problem of actually getting an appointment with one, I can only suggest that you will have to be very persistent. Kind regards,
  15. I recently was ordered blood test by an orthopedic doctor. He said I have high numbers for systemic sclerosis. He is referring me to a rheumatologist. I am on my 3rd rheumatoid doctor trying just to get an appointment. This 3rd one has had my paperwork for a week and I can’t even get them to call to make my first appointment. I feel anxious to get to a doctor to get info. There are no specialists in my area. So my question is, is it difficult to find doctors who treat this? Thanks.
  16. Hi Daughter Ang, Welcome to these forums to you and your mother. I'm sorry to hear that your mother has been experiencing worrying symptoms and has a possible diagnosis of scleroderma hanging over her. I can understand how anxious you're both feeling and of course, it's not possible for me to be able to predict your mother's prognosis regarding the disease. We do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialist knowledge and expertise. I've included a link to our expert in Canada. Because of the very unpredictable nature of scleroderma, it does affect everyone differently; however, to give you some perspective, I have limited scleroderma with what was in the beginning serious lung involvement and after being successfully treated by a top lung hospital (I'm in the UK) I'm happy to say that my lung function is now better than the average persons' (my consultant told me they could pull people in off the streets with much worse lung function than me!) Thankfully, I've never had any gastrointestinal problems, but I've known friends who have and they are able to lead a comparatively "normal" life, so a diagnosis of scleroderma is certainly not necessarily a death sentence. I've included links to our medical pages on Lung Involvement, Gastrointestinal Involvement and Raynaud's, to give you a little light reading and hopefully allay your fears a little (googling "scleroderma" is actually not a good idea as there is a lot of inaccurate and scaremongering stories about it on the internet.) It's possible that other members will be able to give you some more information about their own cases. Kind regards,
  17. Hi PleaseHelpMe, Firstly, welcome to the forum, which I hope you find helpful, along with the website. I'm sorry you are feeling unwell again, though pleased to hear that at least your bloods have returned to normal (which seems a bit weird to me too). Something interesting I picked up from your post was that you saw an ENT specialist because your eardrums blew out. I ask because I've been getting a lot of pressure behind my eardrums for years and my general practitioner prescribed Beconase, which helps immensely, but she was a little concerned about the length of time I have been using it. I wonder if you could tell me something about what caused your ear problem and how it was treated. I didn't ever relate my ears to SSc, but put it down to allergies due to an almost permanent state of having a runny nose and/or or blocked sinuses, though I wonder whether these may also be part of the autoimmune reactions. Thanks, Dimarzio
  18. Hello all, I sincerely hope this message finds everyone in good health. I am joining this forum because my mother (age 61) has been diagnosed with Scleorderma. I just got back from the hospital with her and possibly like everyone else here when they were first diagnosed, scared myself immensely while researching for this unheard disease online, this is also how I found this website, and what a great relieve to read your real life experiences. My mother has had her fingers turn white and numb since almost 15 years ago, but it was mild and didn't affect her quality of life at all, so we didn't take it too seriously. She saw her family doctor regarding this issue in the past but was waved away diagnosed because there were no other symptoms. Recently, she has been experiencing having dry mouth and the inability to create much saliva. She has to keep hydrate her mouth by drinking water when she talks and eats. She also felt difficulty swallowing, this has actually first occurred also about 15 years ago, but very vaguely, and is becoming more noticeably recently. We saw a Rheumatologist and ran many tests. Her result indicators seem different from what I see in this Forum (maybe because we are in Canada ? ) But here is the diagnosis: Scleroderma Disease profile : Positive ANTI CENP A : High positive ANTI CENP B : High positive ANTI Ro52 : Weak Positive And the explaining says : This is associated with the limited cutaneous form of scleroderma or CREST syndrome, and is also seen in patients with Raynaud's phenomenon that may progress into scleroderma. So I am assuming she has CREST because most of her symptoms also fit. In the meantime, we have also done a scope to see her colon and esophagus and turned out that she has a narrowing/stricture at the lower part of her esophagus. She has also done an ECHO which came out healthy ! (phrew) What worried me the most is that, she had done a breathing test (PFT) and it showed "moderately reduced diffusion capacity with mid air trapping and normal airflow rates" These features would be compatible with interstitial lung disease , pulmonary vascular disease, and emphysema. I then went on researching for lung involvement in CREST and it scared me even more ! All the google suggests that came out were about life expectancy and the outlook for lung involvement really doesn't look too good. Although my mother does not have any lung related symptoms. I guess the main reason I'm here is to seek a peace of mind before we get to meet with the doctors again, and also to hear from your experience ! Thank you so much in advance for your responses, they will mean a lot to me !
  19. Prevalence and risk factors for osteoporosis in individuals with chronic obstructive pulmonary disease (COPD): a systematic review and meta-analysis. Osteoporosis is prevalent in individuals with COPD and the prevalence appears to be high and similar in many countries. PubMed, Chest, 07/25/2019. (Also see Osteoporosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  20. I have Scleroderma and Lupus, Rheumatoid Arthritis, high blood pressure, COPD and Fibromyalgia. So I bought a hot tub. Thought it would help but when I got out after 30 minutes I've been in pain all night and still this morning. Why?
  21. Hi PleaseHelpMe, Welcome to these forums! Please note I have no medical training. I can understand your concern when taking a cocktail of medication, but actually I would never advocate simply stopping taking the drugs, without the prior consent of your doctors. However, the scenario you describe can happen, as blood tests can vary enormously, particularly over time and it is possible to have different results from each set of blood tests. This is why simply diagnosing scleroderma and other autoimmune diseases on the strength of the blood test results is very unreliable. Please see our sticky on the subject. On a personal note, my blood tests have shown the same difference since I was first diagnosed ten years ago; at that time I had a plethora of different antibodies, but at my last blood test, the ENA screening was negative. No doubt, I still have the disease but it has certainly stablised and I am now gradually weaning my medication down, with a view to coming off the drugs completely. I would suggest that as you appear so concerned about it, that you speak to your doctor/ rheumatologist and let them advise you of any further action you should be taking. Kind regards,
  22. A comprehensive analysis of antigen-specific antibody responses against human cytomegalovirus (HCMV) in patients with systemic sclerosis (SSc). More prevalent and/or stronger antigen-specific HCMV responses are noted in SSc compared to controls, implying a role of these viral responses in SSc development. PubMed, Clin Immunol, 07/29/2019. (Also see Antibodies) 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 09/16/2019.
  24. I'm sorry if I should be digging through the archives for similar posts. I'm on my lunch break at work and I just have to get this out there immediately. I was diagnosed with Limited Systemic Sclerosis in January of 2007. I was treated until I thought they were going to kill me. 3 years of chemo, 4 years on O2, anti-malaria drugs, anything you can think of, I was given. They were talking about a stem cell transplant when I finally said enough and went off of almost all drugs and stopped going to the doctors. That was about 5 years ago, and I managed to get back on my feet again. For the most part. Lately I've had a slew of symptoms reemerge, so I caved and went to an ENT. Well, it was actually because I blew my eardrum out, but anyways, she was really interested in my history, so I let her take my blood and run a rheumatological panel. I got a call from her today saying my bloodwork was just peachy. As in, I had nothing going on. Seriously? I was tested multiple times in the past and came up with positive ANA, anticentromere antibodies, speckled pattern. This morning I've been feeling horrible, like the past, and then I got this call. How is this possible? I was all ready to get the bad news- that I was used to- and then I get that call. Can anybody tell meanything about how this could be possible? Please respond. I am so confused. Thanks.
  25. Microplastics contain carcinogens and other toxins. Not sure what planet WHO are on with this one.
  26. Earlier
  27. Don't worry about drinking microplastics in water, UN says. The World Health Organization says the levels of microplastics in drinking water don't appear to be risky, but that more research is needed. NBC Health News, 08/22/2019. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 09/14/2019.
  28. Imbalance between CD8+CD28+ and CD8+CD28- T-cell subsets and its clinical significance in patients with systemic lupus erythematosus. These data suggest that high expression of Fas, FasL and IL-6 and low expression of CTLA-4 by the CD8+CD28+ T-cell subset promotes the activation-induced cell death of the CD8+CD28+ T-cell subset. PubMed, Lupus, 2019 Aug 9:961203319867130. (Also see Causes of Lupus and B Cells and T Cells) The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 09/14/2019.
  29. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 09/14/2019.
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