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  1. Today
  2. Has anyone here heard of or know of anyone who has made a full recovery from Sclero? I have personally made some changes over the last 2-3 years that have significantly improved my day to day life with diffuse Sclero, and I’d love to know if others have done the same!?
  3. Shelley Ensz

    Giving up.

    Hi Quiltfairy, I can also relate to always imagining the worst, but being relieved to have any answers, even if they are negative or another big thing to adjust to. For some reason, just like Jo and Sweet, it is stress-relieving for me to imagine the very worst (this'll kill me by tomorrow, for sure!) and then anything less than that seems like a happy little walk in the park for me. Maybe it's because it changes my attitude from feeling sorry for myself, to being grateful that it's not even worse than it is; and I'm certain that any bits of gratitude improve my mood and sense of well-being. I'm sorry you have even more serious medical issues to deal with. The one thing I do know is that you have the solid determination to tackle them head on, come what may, as that somehow always shines through in your posts, even during those moments when you might be feeling at your wit's end. Here's some more hugs, to help you get through today.
  4. Shelley Ensz

    Hiatal Hernia

    Hi Curt, Welcome to Sclero Forums. Jo is spot on, as always, in that this is not normal and you need to contact your surgeon/doctor right away. The normal progress is to be able to be able to gradually return to normal eating. Unfortunately, many esophageal surgeries are botched, and require fixing by a more experienced surgeon. I hope you're just encountering a slow healing process; but that foamy substance and things not staying down would get me straight back into the doctor's office or even emergency room. My late husband had a Nissen Fundoplication surgery many years ago. He had an extremely successful surgery and was back to regular eating, with no heartburn, very quickly. He never had any foamy stuff and he was able to eat regular meals (not just a few bites) within a few days of surgery, but of course according to his post-op instructions. The only frightening thing about it, for me, was that his surgeon had a bunch of other patients lined up at the same time -- and all of them were re-operations to fix botched esophageal surgeries that were originally done by less experienced surgeons. I'm an absolute stickler for researching anyone who's going to operate on me (in non-emergency situations). I research them online, interview them, compare hospital safety and expertise ratings, etc. And if you need this fixed, for any reason, I strongly suggest you find that top medical center and surgeon for it in your area. You'll know you've found them when you see them reporting that they are the one who repairs the messes made by other surgeons, and when that is far and away the most popular surgery they do. Please, see the doctor and let us know what you find out, will you?
  5. Shelley Ensz

    Concerned about a skin formation on face

    Hi Marysue, Welcome to Sclero Forums. Although I'm not a doctor and have no medical training at all, one thing I can say is that I've never heard of anyone describe morphea as looking like a patchwork tic tac toe. If it were me, I'd see a dermatologist who specializes in skin diseases, right away. It'd more likely be another skin disease and certainly, skin cancer is always a concern with any new lesion. I'm sure you know that some types of skin cancer can be rapidly fatal if not caught in time, and may even advance underneath the skin so as to not be so obvious, but younger folks reading this thread may not be aware of that. And of course, it could be something as normal as dry skin, or as common as eczema. The only problem is, it takes a doctor to diagnose and treat, whatever it is. Please let us know what you find out, as it may help other people who stumble across this thread, down the road. And, don't be a stranger, just because you've had morphea forever and a day! Many of our members have morphea and our new ones especially always appreciate hearing from someone who has had morphea for many years.
  6. Yesterday
  7. Advances in the early diagnosis and therapy of inclusion body myositis (IBM). Antibody testing and muscle imaging results may improve our ability to diagnose IBM and the availability of effective disease modifying treatments could soon become a reality. PubMed, Curr Opin Rheumatol, 07/31/2018. (Also see Myopathy and Myositis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. The International Scleroderma Network thanks Genentech for their sponsorship support. Posted 09/21/2018.
  9. Last week
  10. 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.
  11. Joelf

    Concerned about a skin formation on face

    Hi Marysue, Welcome to these forums! I'm sorry to hear that you've been suffering with scleroderma for such a long time. Morphea usually begins as patches of yellowish or ivory-colored rigid, dry skin. These then become hard, slightly depressed, oval-shaped plaques which usually have a whitish or yellowish center surrounded by a pinkish or purplish halo. Please note that I have no medical training, but whilst it is possible that this new skin problem on your face could relate to a new morphea patch, particularly as you have had this before, it could also be totally unrelated to morphea and be caused by something completely different. This is one of the problems with a complex disease such as scleroderma; it's easy to assume that because the disease is already present, any other symptoms automatically relate to it and it can blind one to any other illnesses which can have nothing to do with it. I would therefore suggest that you go to your primary doctor, with a view to obtaining a referral to a dermatologist, who is the best person to advise you of the best method of treating this new skin problem. Should it subsequently turn out to be caused by scleroderma, then a referral to a listed scleroderma expert would be your next move. Kind regards,
  12. I have scleroderma on the back of one arm which has existed since I was 15 years old. Now, at age 73, I have a patchwork looking piece on my face (looks like a tic tac toe formation). Is this scleroderma?
  13. Shelley Ensz

    Hi guys, Newly diagnosed and confused.

    Hi Bikergran, Welcome to Sclero Forums! As Jo and Dimarzio mentioned, managing systemic forms of scleroderma requires regular (often annual) testing of heart, lungs, kidneys and so forth, just to try to catch any possible involvement early. It doesn't mean we have it, or that we will get it, but it is great to have someone watching out for you! One of the roughest things for many of us is getting used to the testing, and waiting for test results. Now I'm basically oblivious to tests, and sometimes even the results as you get used to living with things being out of whack. Oh, and all the scare-mongering that we get at first, when we are most prone to take the potential seriousness of the disease to heart. I remember my first in-person support group meeting, over 20 years ago. The first person I was introduced to had a bunch of amputations on their hands and feet, and she was excited about going in to get another part of her leg amputated. But, she was going to make one last trip to the casino and a big night on the town, first! I was like, oh, so, you get scleroderma and then they just chop you up into itty bitty pieces, but it's okay, because you can still party hard?! It took awhile for me to develop a more balanced view of the illness, and to focus more heavily on people who had lived with it, in varying states of distress or peace, for very many years. Now I know she was actually a great rarity, and that with good medical care, a cooperative and educated patient, and a positive outlook, many of us are living far longer and far happier than we ever believed possible. Please listen to them closely enough to adhere to whatever testing schedule they devise for you. Seek out the top scleroderma expert care that you can find. Make plans to continue living a full life, even if you have to make some modifications to do it. Jo is quite the accomplished equestrian, and I have some very exciting hobbies. Don't think so positive that you skip follow-ups or treatments, as that bears negative results. But seriously, I can really relate to the dismay of a doctor running hot and cold on different visits, and often, for no change in my actual status. Sometimes I think they want to just be nice on first meeting and get to know us a bit, then more serious to make sure we take their recommendations to heart, and then when we're obliging, they lighten up again, until something more imposing comes along.
  14. Shelley Ensz

    Recently Diagnosed with CREST.

    Hi Toughasnails, Welcome to Sclero Forums. I'm sorry you have such severe or progressive involvement. This is often a very hard disease to predict, as the symptoms and progression vary with everyone, and remissions can occur at any time (with or without treatment). I've outlived my prognosis so long, and so many times, that it's downright laughable. Back in the 1970's they said I had 2-3 years left to live IF I survived that hospitalization (they were very doubtful about that.) In the mid-90's for the diffuse scleroderma diagnosis, they said I had 3 to 5 years and there was no treatment and no cure. Two years ago, I suffered a complication that has a 99% mortality in 2 years. But, with treatments, I'm better than I've been in way over 20 years and I'm even enjoying a round of skin softening and incredible energy and endurance. I'm NOT saying your situation isn't serious or that it shouldn't be taken very seriously, indeed. I'm just saying, many of us around here have discovered that the illness is not entirely predictable, that it can get worse or even better, at any time -- sometimes, even without treatment! New treatments are emerging every day. Things like dialysis and oxygen and even lung transplants and IVIg are often extending lives and sometimes even improving the quality of life. Now, some people are okay with just packing it in and not bothering with fancy doctors or treatments. We all have our own approach and it can also change at any time, and there's truly a point where it's simply not worth fighting medically and we benefit by acceptance and making the very best out of every second we have left. Others say, hey, okay, I need to at least try to pull out all the stops as I feel strongly driven to live longer. We support you, and no matter what your approach, we'll be here for you. But you would not believe the number of people I've heard from who were diagnosed as "hopeless", who it turned out, were not. Much of the wrong prognosis is from doctors who are not scleroderma experts -- and they can be just as off with optimism as pessimism, often denying the seriousness of our condition or progression, too. If you have the fighting spirit, see if you can get in to see a real, listed scleroderma expert. There are only a few dozen in all the United States, so it's often not easy or even possible (with insurance, travel, being too sick to travel, etc.) It's a cute trick living with such uncertainty. When we get a longer bit of time than we expect, it challenges us afresh to try to make the best of it . . . in a very similar but different way than knowing our time is very short indeed.
  15. Joelf

    Recently Diagnosed with CREST.

    Hi Tough as Nails, Welcome to these forums! I'm sorry to hear that you've recently been diagnosed with limited scleroderma (aka CREST) and appear to have received such a worrying prognosis. Although you're suffering kidney and lung involvement, as each case of scleroderma is different, it's very difficult to speculate exactly how the disease will progress (I have lung involvement and thankfully have lived considerably longer than 6 months to a year since I was diagnosed! ) We do recommend that our members, if possible, consult a listed scleroderma expert, as such a complex disease as scleroderma requires specialist knowledge and expertise, in order to be diagnosed and treated correctly. Kind regards,
  16. How People With Type 2 Diabetes Can Lower Their Risk of Health Problems. A growing number of studies suggest that getting a handle on a few key risk factors can bring type 2 diabetes under control. Time Healthland, 08/15/2018. (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.
  17. Tough as nails

    Recently Diagnosed with CREST.

    Hi everyone, I'm new to this website and new to my disease. I recently got diagnosed with CREST disease; it's already affected my kidneys and my lower lungs. I don't know what to expect next. I was scared, the doctor said at first that I had 6 months to a year and at my last appointment they told me I had six months. I don't know how fast it moves, but that sounds awful fast to me. If anyone out there is familiar with this give me a holler back, please.
  18. dimarzio

    Hi guys, Newly diagnosed and confused.

    Whilst I have no heart or lung symptoms, I have a periodic echocardiogram and lung function tests. This is normal practice where there is a diagnosis of Scleroderma. I too have been perplexed by different approaches taken by the rheumatologist, at times seeming negative and at others, more positive. General aches and pains are not uncommon, typically in the hips and lowerback, but also around other joints and in the neck. Exercise and physio can help a great deal.
  19. Expression of interleukin-18 in muscle tissue of patients with polymyositis or dermatomyositis and effects of conventional immunosuppressive treatment. IL-18 is highly expressed in muscle tissue in the context of inflammatory myopathies and based on its plausible effector functions could provide a novel therapeutic target in future. PubMed, Rheumatology (Oxford), 08/08/2018. (Also see Treatments for Dermatomyositis and Polymyositis and Interleukins) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  20. Joelf

    Hi guys, Newly diagnosed and confused.

    Hi Jan, Welcome to these forums! I'm sorry to hear that you've had worrying blood tests and a scary consultation from a rheumatologist who has such a gloomy and pessimistic outlook. No wonder you're feeling a bit worried! Please note that I have no medical knowledge apart from a now out of date first aid certificate, which is not much use, unless I should come across someone with a broken leg, or some such minor injury. However, I would reiterate the advice we always give regarding blood tests; whilst a useful tool to help to obtain the full picture, they are by no means conclusive or the be all and end all of a diagnosis and it is possible to have positive blood tests and yet never go on to develop the full blown disease and vice versa, as many of our members can testify. Far more important are the clinical signs and symptoms of the disease. Of course without second sight it's impossible for me (and your rheumatologist, for that matter! ) to predict how the disease will pan out for you and quite frankly I would have been less than amused to have been given such a frightening chapter and verse of the possible progression of the disease, which may never come about. It might progress into lung and heart involvement, but by the same token, you might get run over by a bus, or some other eventuality! Certainly, whilst being aware of the unpleasant side of scleroderma, I feel that your rheumatologist was jumping the gun somewhat, particularly as the symptoms of lung and heart involvement weren't actually present at that time. We do recommend that our members, if possible, consult a listed scleroderma expert, as such a complex disease does require specialist knowledge and expertise, which is often beyond the scope of the average rheumatologist. As you're in the UK, perhaps it may be possible for you to obtain a referral to The Royal Free Hospital; I'm a patient there myself and they are experts at dealing with the idiosyncrasies of scleroderma. They are really the best people to determine any further tests you may need. Just to put things into perspective for you, I have had lung involvement for the past ten years and have no intention of dying in the near future, if only to make sure I get my money's worth from my pensions! ) Kind regards,
  21. Good morning, I'm in the UK and last November a blood test showed ANA positive and a pattern indicating Scleroderma CREST. The blood test was done as my mother had Lupus and I was experiencing pain/stiffness in back and hips and had raised Ferritin levels in my Liver. My general practitioner explained that just because I had the antibodies it didn't mean that I would develop Scleroderma and she referred me to a Rheumatologist. I had my first hospital appointment in Jan and they confirmed no visible symptoms, said they weren't unduly concerned and would just keep an eye on me. They also referred me for physio which helped the back/hip pain tremendously and I've been feeling much better. However, last week I had a further appointment at Hospital with the same Consultant and it was slightly odd. She started telling me in a very serious way that I had this antibody (she was talking to me as if it was my first visit and her approach was totally different to last time I'd seen her) she then went on to say that I needed a Heart scan and Lung function test as it may have caused the right side of my heart to thicken and my lungs. She then proceeded to explain how the disease progresses - I don't want to even think about some of the stuff she said. I left the Hospital in a daze - totally shocked. Sorry for the long post and I appreciate that many of you are already suffering with this horrible disease and I send you love and best wishes for the future. I guess what I need to know is does a positive test mean it's always going to develop? I'm just feeling scared and so worried at the moment. Thanks for reading, Jan.
  22. High Prevalence of Antithyroid Antibodies (ATAs) in a New Zealand Cohort of Patients With Systemic Sclerosis (SSc). There is a higher prevalence of ATAs in SSc and Ssc– overlap syndrome compared with the general population and screening these patients for ATAs is a reasonable measure. PubMed, J Clin Rheumatol, 2018 Aug;24(5):264-271. (Also see Antibodies and Thyroid Diseases) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. This May Be the Secret to Feeling Younger and Living Longer. New research points to a way to keep that youthful state of mind, at least for elderly adults: feel in control. Time Healthland, 08/13/2018. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  24. Adipokine interactions promote the pathogenesis of systemic lupus erythematosus (SLE). Adipokines levels and associated clinical manifestations suggest involvement of adipokines in disease pathogenesis of SLE. PubMed, Cytokine, 2018 Aug 8;111:20-27. Also see Research on Systemic Lupus Erythematosus) 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 Gilead for their sponsorship support. Posted 09/14/2018.
  26. Earlier
  27. Evaluation of Vitamin B12 Deficiency and Associated Factors in Patients With Systemic Sclerosis (SSc). Vitamin B12 deficiency is frequent in SSc and has multiple causes and all patients should be monitored for Vitamin B12 deficiency. PubMed, J Clin Rheumatol, 2018 Aug;24(5):250-254. (Also see Supplement Guide for Systemic Scleroderma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  28. Child passive smoking 'increases chronic lung risk'. Non–smoking adults have a higher risk of dying from serious lung disease if they grew up with parents who smoked, according to US research. BBC Health News, 08/19/2018. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  29. In loving memory of Carlos Forney a donation was made by Nancy Wyzinski to the nonprofit International Scleroderma Network. (Also see Sclero Shop/Donate) Posted 09/11/2018. 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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