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  1. Yesterday
  2. New research shows vitamin D could lower risk of colorectal cancer. The American Cancer Society found having higher vitamin D levels than are currently recommended reduced the risk of colorectal cancer by 22 percent. NBC News, 06/14/2018. (Also see Vitamin D and Cancer) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Hi Anne, Welcome to these forums! I'm sorry to hear that you've been suffering with morphea and have arthritis complications as well. I have some arthritic changes in my joints, so I can sympathise with you. Shelley's given you some good advice and I've included a link to our medical page on morphea, which I hope you'll find helpful and informative. Kind regards,
  4. You have been so helpful. Thanks much!!
  5. Shelley Ensz

    Treatment question for Scleroderma/Morphea

    Hi Anne, Welcome to Sclero Forums! Morphea often subsides, even on its own, within 3 to 5 years. It can recur, but it's not like a chronic illness that is expected to recur. In about 25% of cases, there might be one or two other symptoms along with the morphea. You'd probably like the page on our main site about Conditions Associated with Morphea. Osteoarthritis is caused by overuse and aging and is by far the most common type of arthritis. So you might be questioning whether your arthritis diagnosis is correct. To look into that, see Diagnosing Arthritis by the Arthritis Foundation. If your symptoms fit the inflammatory arthritis profile better, then you should seek a referral to a rheumatologist. If it's deemed to be inflammatory arthritis, then you may want to see a scleroderma expert, but that's highly unlikely without other bothersome symptoms, such as Raynaud's, tight skin, etc. See Diagnosis of Scleroderma. I'm only a patient with no medical training at all, but it's my understanding that follow-up would not be required for morphea that is in remission and without any recurrence or complications, beyond the usual skin surveillance by you, your primary doctor and/or your dermatologist.
  6. 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
  7. Last week
  8. The relationship of endocannabinoidome lipid mediators with pain and psychological stress in women with fibromyalgia (FM)– a case control study. This study reports about elevated plasma levels of endocannabinoidome lipid mediators in FM. PubMed, J Pain, 06/06/2018. (Also see Endocannabinoid System and Treatments for Fibromyalgia) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. CharlyofOz

    New to Scleroderma? Help!

    I have limited scleroderma or CREST syndrome and it has bought on some terrible symptoms with the Raynaud's being the worst. My hands nose, ears and feet are effected but they not only go white because of the lack of blood being transported, but they turn black when a bad attack comes on. So you must turn your fear into education, because here you will have the support and even support ways and tips to handle your symptoms. Just remember forearmed is forewarned With Respect Charly
  10. Skin Gene Expression Is Prognostic for the Trajectory of Skin Disease in Patients With Diffuse Cutaneous Systemic Sclerosis. Skin gene expression of biomarkers may provide guidance in decision–making about which patients should be considered for aggressive therapies and/or for clinical trials. PubMed, Arthritis Rheumatol, 2018 Jun;70(6):912-919. (Also see Diffuse 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.
  11. Shelley Ensz

    Anticentromere antibodies decrease

    Hi Tate, Welcome to Sclero Forums! There's one aspect of your post missing. That is, scleroderma is never diagnosed based only on blood work. The diagnosis depends upon the presence of certain symptoms or a constellation of symptoms, which I presume were the reasons you had the blood test run in the first place. With the right symptoms, you can be diagnosed with scleroderma without any positive blood work at all. By the same token, you cannot be "undiagnosed" with scleroderma just because an antibody returns to normal. Many people experience changes in their antibodies over time, if their doctors persist in testing for them. Perhaps its good if antibodies return to normal, or interesting if another antibody suddenly shows up, but the real question is whether your overall health is worsening, staying the same, or getting better. For me, I wouldn't read too much into antibodies. They can help during the diagnosis stage, but most of them don't directly tie in with the disease or help with managing the progression. It's possible to die of scleroderma while having entirely normal antibodies; and it's possible to live with scleroderma for many decades despite very impressive antibodies. You haven't mentioned your symptoms worsening, so I may presume they are stable. And with your treatment plus a bit of luck too, maybe they will stay that way!
  12. How grief affects your brain and what to do about it. Understanding grief is an important part of healing after a loved one dies. Better Health News, 06/14/2018. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. Hi Dimarzio, That's an interesting point; although not strictly an immunosuppressant per se, plaquenil does have immunosuppressant properties and is also an anti-malarial drug and is included (with other immunosuppressants) under the category of drugs referred to as DMARDs (Disease-Modifying Anti-Rheumatic Drugs). It's widely used for autoimmune conditions, such as scleroderma, lupus and rheumatoid arthritis and many of our members have been taking it successfully with good results. Kind regards,
  14. dimarzio

    Anticentromere antibodies decrease

    Clearly, any immunosuppressant is going to suppress the activity of the immune system, which to me would explain why the antibody count is lower. I would therefore expect the numbers to go up again if you stopped taking the immunosuppressant. Plaquenil is not a cure, but it will presumably slow things down.
  15. Shelley Ensz

    New to Scleroderma? Help!

    Hi Hanlucks, Welcome to Sclero Forums! I'm sorry you have Hashimoto's and concerning blood work and swollen joints. I'd urge you not to panic over scleroderma, just yet! Sometimes Hashimoto's can cause a positive ANA, although no telling if it's the sort you have. Hashimoto's can also cause swollen joints, from slow metabolism. So, right now, you might be in the clear! It's way too early to panic over scleroderma, even if you actually had scleroderma, it'd be on the extremely mild side at the moment, from the general sounds of things. Some phrases that helped me in the early days were, "Don't trouble trouble until trouble troubles you!" (but you could reasonably argue, this is already some sort of trouble) and "It is what it is." I hate the line, "It is what it is," but I think the point of it is that since it is whatever it is, whatever I think about it surely isn't going to change it much, one way or another. So it reduces my temptation to endlessly dwell on the subject (aka rumination which is a fantastic precursor to anxiety and depression, if not nipped in the bud in the early stages.) See what your rheumatologist says. And if there's still any remaining doubt about scleroderma, see a listed scleroderma expert. Okay, now you have a support group -- and a plan of action. You can do this thing! It won't be as bad as it appears right now. But, that said, we all do know what that initial panic is like. Pretty much we've all been there, done that, and wish we hadn't strung ourselves out over it. Yes, that's my biggest regret in what I've been through, is the pre-stressing before knowing for sure what I was dealing with. It's a trick to not do that, when it's our very own health and well being that is in question!
  16. Joelf

    New to Scleroderma? Help!

    Hi Hanlucks, Welcome to these forums! I'm sorry to hear that you're suffering with Hashimotos and have the added worry of possible scleroderma complications as well. 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. We do have numerous threads on this subject. We do recommend that our members consult a listed scleroderma expert as this complex disease does require specialist knowledge and expertise, in order to be dealt with correctly and can be out of the league of a common or garden rheumatologist. I've included links to our medical pages on Common Medical Tests for Scleroderma and Preparing for Doctor Appointments, which I hope you'll find helpful and informative. Whilst I can understand your concern at the possibility of having a disease like scleroderma, I would advise you to try not to be scared at this stage (easy to say, I know ) as things may not be as bad as you fear and unfortunately worrying and stressing over a possible diagnosis of scleroderma could exacerbate the problem and will almost certainly make things worse. Please keep posting and let us know how you get on with your rheumatologist's appointment. Kind regards,
  17. The relationship between body mass index and pain, disease activity, depression and anxiety in women with fibromyalgia (FMS). Obese female FMS patients had higher levels of pain, tender point count, disease activity and depression. PubMed, PeerJ, 2018 May 28;6:e4917. (Also see Fibromyalgia) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  18. I have Hashimotos and have been really having awful symptoms lately. They ran the ANA test and it came back positive for sclero with a 2.3. I have a referral to a rheumatologist but I’m so scared. The only symptom I have is on and off swollen joints. Also - when I see a rheumatologist what tests should I expect? Does anyone know about this? Can a blood test be wrong - could I be okay? Is this 100% sure I have it? My mind is reeling.
  19. A Feasibility Study of a Novel Low Level Light Therapy (LTTT) for Digital Ulcers (DUs) in Systemic Sclerosis. LTTT for DUs is safe, feasible and well tolerated. There was an early tentative suggestion of treatment efficacy. PubMed, J Dermatolog Treat, 2018 Jun 4:1-30. (Also see Treatments for Digital Ulcers) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  20. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 07/14/2018.
  21. Hi Tate, Welcome to these forums! The problem with positive blood tests is that they're not always the be all and and end all of a scleroderma diagnosis. Far more important are the clinical signs and symptoms. Although blood tests help in the diagnostic process and are a useful tool when used in conjunction with other medical tests, it is quite 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. We do have numerous threads on this subject. Also blood tests can vary a lot each time they're taken, which is why a scleroderma diagnosis is invariably complicated and not very straight forward. It's also possible to be diagnosed, undiagnosed and then re-diagnosed as the disease progresses. Please note I have no medical training (apart from an out of date first aid certificate) however, I am a bit surprised that you've received a definite scleroderma diagnosis purely on the results of blood tests. When I was diagnosed I had the positive antibody PM/Scl, but I also had fairly typical scleroderma lung involvement and various other symptoms, which enabled my medical team to make a correct diagnosis. This complex disease does affect everyone differently and so it's quite possible that any symptoms you have may settle down and stablise, just as mine have. We do recommend that our members, if possible, consult a listed scleroderma expert, as such a complicated disease does require specialist knowledge and expertise. Kind regards,
  22. In September 2017, I was diagnosed with scleroderma based on positive Anticentromere antibodies result. New results from this month show marked decrease and antibodies are now in the normal range. Is it possible to receive a false positive? I have been taking Plaquenil since September. Would that cause a decrease in antibodies?
  23. Men With Erectile Dysfunction Are Twice As Likely to Have Heart Disease, Study Says. Those with erectile dysfunction were twice as likely as men without the condition to have a heart attack, stroke, or die of a heart problem. Time Healthland, 06/11/2018. (Also see Sexuality and Scleroderma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  24. Joelf

    Sine Scleroderma

    Hi Charly, Welcome to these forums! I'm sorry to hear that you're suffering unpleasant symptoms due to limited scleroderma, aka CREST. I do hope that you're receiving suitable treatment from a listed scleroderma expert, as this complicated disease does require specialist knowledge and expertise , in order for it to be dealt with correctly. Kind regards,
  25. CharlyofOz

    Sine Scleroderma

    I truly hope you find some kind of relief, as I am going through this also as I have crest syndrome. With Respect Charly
  26. Earlier
  27. Hi Siswithsoul, Welcome to Sclero Forums! I may be wrong (I often am!) and I have no medical training at all. But you might be tending to the lupus-y side of things; and SCL-70 is positive in lupus sometimes, as well as scleroderma. Generally speaking, the sun sensitivity would be much more of a lupus thing, and about 25% of SLE patients have the SCL-70 antibody. I'm certainly not saying that's the case, but I am pointing it out for others who hit this thread with an SCL-70 question. The two illnesses are very close, so it's not unheard of for many of us to be diagnosed wrongly with one or the other, or even to have them in overlap.
  28. Shelley Ensz

    Diagnosis dismissed

    Welcome to Sclero Forums. I'm sorry you've had such a runaround with your healthcare. Unfortunately autoimmune diseases can be extremely hard to properly diagnose, or even to rule out. I've known people who were following by a rheumatologist for ten years before finally being given the all-clear. I can't even imagine being so worried for so long about what turns out to be such a huge pile of nothing. But, autoimmune ailments can wax and wane, even clear up on their own, sometimes, which just adds to the overall confusion. I'm with Jo. Please work with your primary doctor to see about seeing a real scleroderma expert, or do the Mayo thing, or even both.
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