Jump to content
Sclero Forums

All Activity

This stream auto-updates     

  1. Today
  2. Yesterday
  3. 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.
  4. Last week
  5. 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!
  6. 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.
  7. 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,
  8. 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.
  9. 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!
  10. 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,
  11. 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.
  12. 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.
  13. 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.
  14. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 07/14/2018.
  15. 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,
  16. 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?
  17. 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.
  18. 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,
  19. 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
  20. 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.
  21. 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.
  22. Hi Siswithsoul, Welcome to these forums! I hope you will enjoy being a member of our community and continue to post on the Forums. Kind regards,
  23. I too have continually had positive Scl-70 results. It started at 6.8 and is (as of my last tests in August) now at 4.6. It's fluctuated between those numbers for the last 7 years but is always positive. Other than Raynaud's, gastric reflux (which I've had for years), some joint point, and photosensitivity, I have no other symptoms.
  24. Rheumatic Disease Autoantibodies in Patients with Autoimmune Thyroid Diseases (ATD). We found rheumatic autoantibodies in 17.5% of ATD patients without rheumatic diseases and there was no clinical rheumatic disorder during the period of five years. PubMed, Med Princ Pract, 06/04/2018. (Also see Thyroid Diseases and Systemic Autoimmune Rheumatic Diseases) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  25. Joelf

    Diagnosis dismissed

    Welcome to these forums! I'm sorry to hear that you're suffering with so many unpleasant symptoms. Whilst I can understand your frustration at being unable to obtain a diagnosis, the symptoms you describe could apply to any number of health problems (including autoimmune) and not necessarily scleroderma. Unfortunately, the nature of these diseases are such that it does mean that a correct diagnosis is extremely difficult, not least because they affect everyone differently. As I'm sure you know, we're not doctors, we can't diagnose, and I have no medical training at all (apart from a now out of date first aid certificate). This is why we always advise our members to consult their doctor for medical advice, as we are unable to give a diagnosis. We provide basic support and general information, but we are not doctors, counsellors, psychiatrists, social workers, or legal, financial or disability advisors. 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 and the clinical signs of the disease are far more important. 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. There is a listed scleroderma expert, Kevin M. McKown, MD in Wisconsin and swapping around and seeing numerous rheumatologists, but getting nowhere, is rather counter productive, so I would suggest that your first port of call would be to go back to your primary doctor and try to obtain a referral to him, should your doctor consider that necessary. Kind regards,
  26. Guest

    Diagnosis dismissed

    I've been sick for 5 years. I saw my first rheumatologist then with minor issues such as foot swelling / redness of joints in my hands. Positive ANA another test came back positive for rheumatoid arthritis (RA). That doctor left after putting me on etanercept , methotrexate and hydroxychloroquine. The second rheumatologist took me off all medications. To start over and bam! Everything blew up. He said I didn't have RA but didn't know what I had. Had breast implants removed to find they were defective and causing a lot of havoc. The third rheumatologist said I didn't have anything he could help me with after one blood test. The fourth rheumatologist tested positive with scleroderma but dismissed it by saying I didn't have the typical symptoms. The fifth rheumatologist has seen me twice and hasn't done anything. I have severe inflammation internal / external. Body morphs into a crazy looking body. Hormones are way off; I'm 52, used to be super healthy and fit. No dehydroepiandrosterone (DHEAS), testosterone 188. I look like I work out, but bed ridden 80% of the time. Chronic fatigue horrific. Spine is deteriorating, hip and both knees in a very fast progression. The first doctor I think was on point at least the closest. Who gets a positive test and dismissed without doing any further testing? I'm so sick and can't get a diagnosis! I live in Milwaukee, Wisconsin and I'm told there are no good doctors. But in the mean time I suffer. Please help. I need some suggestions, I'm applying to the Mayo Clinic doctors. I'm going to be in a wheelchair if someone doesn't get it going. My skin is changing constantly, but they don't even examine me. I feel like I'm dying slowly. Please help me.
  27. Should all digital ulcers (DUs) be included in future clinical trials of systemic sclerosis (SSc)–related digital vasculopathy? We would encourage the expert SSc community to reconsider the rationale for including only fingertip DUs in future SSc clinical trials, and suggest an agenda for future research. PubMed, Med Hypotheses, 2018 Jul;116:101-104. (Also see Research on Digital Ulcers) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  28. Earlier
  29. Nightmares Are Scary. But Are They Bad For Your Health? When nightmares are frequent and distressing, they can cause real health trouble. Time Healthland, 05/23/2018. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  1. Load more activity
×