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  1. Yesterday
  2. Joelf

    Eosinophilic fasciitis

    Hi Lorraine, It's possible that we may have members suffering with EF, but because it's such an uncommon disease, it may be difficult to find anyone with any more recent experiences which they can share with you. I understand how isolated it must make you feel and I'm hoping that if we do have any current members with this disease that they will come along and post their experiences for you. Please do let us know the results of your appointment with the photo biology unit. Kind regards,
  3. Clinicopathological features of lung cancer (LC) in patients with rheumatoid arthritis (RA). Lower likelihood for receiving surgery, radiotherapy, chemotherapy and targeted therapy was reported for LC patients with RA. Journal of Thoracic Disease, 08/02/2018. (Also see Symptoms and Complications of Rheumatoid Arthritis and Cancer) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  4. Last week
  5. Lorraine Dishingto

    Eosinophilic fasciitis

    Thank you so much for your very prompt response. Most posts seem to be years old. I would like to talk with someone who is suffering from this now as I am. I work in a very busy hospital in Edinburgh Scotland as a staff nurse and no one has heard of it. I've done lots of research and actually diagnosed myself and then an MRI confirmed the diagnosis. I am attending rheumatology, they plan to send me to the photo biology unit in Dundee.
  6. Shelley Ensz

    Full Recovery/Healing from Scleroderma?

    Hi LaBellaVita, Welcome to Sclero Forums! As it happens, the natural course of the disease is to wax and wane, often improving on it's own even without any treatment. This unpredictable course is what has made it inordinately hard to study potential treatments for the disease. Often a treatment will sail through the first two phases of clinical trials, and then flunk third phase, right when everyone feels excited about announcing a possible "cure" for scleroderma. Because of this wavering course of disease, our own individual experiences don't count for very much to scientists, and only the large scale clinical trials can be relied upon. That said, I've had plenty of treatments and lifestyle changes myself that seem to have greatly improved my health, at least for the time being. The actual danger lurking in such improvements is that we'll let our guard down, perhaps stop having our regular scleroderma expert follow-ups, or abandon a treatment that we haven't given sufficient credit to for our improvement. So I rejoice when I notice improvements, keep doing whatever I've been doing, hope for the best, and stay plugged into my medical and support resources, as you never know, for sure, if or when the scleroderma rollercoaster is going to change course.
  7. Anti-CCP antibodies and rheumatoid factor (RF) in systemic sclerosis: Prevalence and relationships with joint manifestations. The prevalence of RF and anti-CCP antibodies is relatively high in SSc, and joint involvement occurs frequently. PubMed, Adv Clin Exp Med, 07/19/2018. (Also see Antibodies and Rheumatoid Arthritis in Overlap) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. Joelf

    Eosinophilic fasciitis

    Hi Lorraine, Welcome to these forums! I'm very sorry to hear that you've been diagnosed with Eosinophilic Fasciitis (EF) and send my best wishes to you. EF is a very rare disease, and is in the family of scleroderma-like illnesses. However it is generally considered to be a bit more treatable than systemic sclerosis (scleroderma). I'm sorry that your illness hasn't responded to treatment, at least, not yet. Unfortunately, most general practitioners have never heard of EF and so it would certainly be worth consulting a rheumatologist who has specialised knowledge of this very rare disease and we have a link here to listed scleroderma experts which I hope might be able help you. We do have some personal stories of people dealing with EF and also another thread about this disease, which I hope will be of interest to you. Kind regards,
  9. Lorraine Dishingto

    Eosinophilic fasciitis

    I have recently been diagnosed with EF after 1 year of suffering and not know what was wrong with me. I have been on prednisolone for 6 weeks which is now tapering down and still can’t close my hands, my joint movement is about 50% and the hand, feet and leg cramps are horrendous. Anyone out there with similar. Feel like I’m the only person on the planet with this. My general practitioner has never heard of it. Many thanks Lorraine
  10. Any Weight Loss Can Be Healthful, but More Can Be Much Better. Overweight people who lost 5 to 10 percent of their weight lowered their risk for metabolic syndrome by 22 per cent. New York Times, 08/17/2018. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. Joelf

    Full Recovery/Healing from Scleroderma?

    Hi LaBellaVita, Welcome to these forums! I've never actually heard of anyone making a full recovery from scleroderma; as there is no proven cure for the disease, I'm not convinced that it's possible. Having said that, I received very successful treatment for my lung involvement, which showed an amazing amount of improvement (I was the hospital's star patient! ) and to all intents and purposes my lung function is within the "normal" range. So whilst still having the disease and obviously being monitored on a regular basis, I'm thankful to say that it doesn't impinge on my life too much, or stop me from doing most of the things I want to do. I'm pleased to hear that you've managed to make some changes over the last 2-3 years that have significantly improved your day to day life, whilst suffering with diffuse scleroderma. Of course it does affect everyone differently and so what may work for one person, may not be successful for another. However, I would say that having a positive attitude is one of the most important factors and also accepting the fact that one has a chronic disease and adjusting your lifestyle to suit it. Please do let us know the changes you've made to your life, which I'm sure will be of help to our members. Kind regards,
  12. 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!?
  13. 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.
  14. 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?
  15. 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.
  16. 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.
  17. The International Scleroderma Network thanks Genentech for their sponsorship support. Posted 09/21/2018.
  18. 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.
  19. 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,
  20. 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?
  21. 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.
  22. 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.
  23. 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,
  24. 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.
  25. 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.
  26. 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.
  27. 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.
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