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Joelf

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  1. Joelf

    New here! Positive Scl-70 antibody.

    Hi Meggiebeth, Welcome to these forums! I'm sorry to hear that you've been experiencing some worrying symptoms and blood test results. Please note I have no medical knowledge (apart from a now out of date first aid certificate). 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. We do have numerous threads on this subject. Although it is possible that you could develop systemic scleroderma with all it's various complications (or even CIDP) it's equally possible that you may never have a problem, but obviously at this stage it's difficult to know which way things will go. One of the main problems in obtaining a definite scleroderma diagnosis (or a diagnosis for any autoimmune disease, come to that), is that these diseases are incredibly complex and affect all sufferers differently. Actually the average time to obtain a diagnosis is, I believe, six years and also the diagnosis can be changed, so because of the bizarre nature of scleroderma, it is possible to be un-diagnosed and then re-diagnosed, as the symptoms can also wax and wane. I'm afraid this can be a pattern with many autoimmune diseases. I realise how worrying and frustrating this can be and I'm afraid that very often the rheumatologist does recommend a policy of wait and see, until further symptoms manifest themselves or not, as the case may be. We do recommend that our members, if possible, consult a listed scleroderma expert, to ensure that this complicated disease is treated correctly, by someone with the correct knowledge and expertise.  However, the crippling anxiety with which you're suffering is most certainly not helping the situation one little bit; I understand how frightened and worried you're feeling, but unfortunately one thing that is certain to exacerbate any illness is the stress involved in trying to find a diagnosis, as stress and anxiety can cause hormonal and cellular changes in our bodies which can lead to a variety of medical problems and is particularly damaging for autoimmune or any other diseases. I can see that the worry of the effect of this disease on your family on top of everything else is making things much worse for you and so I would suggest that one of the things that might help you would be to seek professional counselling or similar to deal with your severe anxiety. You would then, perhaps, be in a better place to deal with any possible diagnosis of scleroderma, or any other disease. Kind regards,
  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. 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.
  5. 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.
  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. 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,
  9. 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.
  10. 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.
  11. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 07/14/2018.
  12. 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,
  13. 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.
  14. 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,
  15. 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,
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