Jump to content
Sclero Forums

Joelf

Administrators
  • Content count

    5,111
  • Joined

  • Last visited

4 Followers

About Joelf

  • Rank
    Star Ruby Member

Profile Information

  • Location
    West Sussex

Recent Profile Visitors

3,947 profile views
  1. 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.
  2. 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.
  3. 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.
  4. 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,
  5. 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,
  6. 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.
  7. 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.
  8. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 07/14/2018.
  9. 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,
  10. 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.
  11. 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,
  12. 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,
  13. 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.
  14. 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,
  15. 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.
×