Jump to content
Sclero Forums

Joelf

Administrators
  • Content count

    4,669
  • Joined

  • Last visited

Everything posted by Joelf

  1. This Woman's Heart Actually 'Broke' After Her Dog Died. Here's How It Happened. The pain after losing a beloved pet could be enough to break your heart, suggests a new report published in the New England Journal of Medicine. Time Healthland, 10/20/2017. (Also see Coping Strategies) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. CREST Sufferer.

    You're very welcome, Taryn and please do let us know how your husband gets on with his neurology appointment next week.
  3. Undiagnosed and with high anxiety.

    Hi Lacey, Welcome to these forums! Whereas I can understand your alarm at the results of your blood tests, I would reiterate the advice given by your rheumatologist regarding the diagnosis for autoimmune diseases, including scleroderma. Although blood tests do have some relevance in the diagnosis of scleroderma, they are only a very small part. This is because it is perfectly possible to have positive antibodies 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 and as it would appear at present that you're not experiencing other symptoms, then a policy of watch and wait is probably the best solution for the immediate future. In any case autoimmune diseases (and scleroderma in particular) are notoriously difficult to diagnose; I believe the average time to reach a diagnosis is six and a half years. We actually have numerous threads on this subject. 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 diseases. As for not knowing what's in store for the future, I'm afraid we none of us know that. It's perfectly normal to experience depression and anxiety along with illness and so it may be beneficial for you to ask your primary care doctor for a referral for counselling if you're finding that your health issues are difficult to deal with. Kind regards,
  4. CREST Sufferer.

    Hi Taryn, I'm very pleased to hear that your husband has an appointment with his neurologist next week. (albeit a cancellation! ) I do understand how worried you are, but as per our guidelines I can't really advise you about pain medication, as different medications work differently on different people and can have interactions with each other, causing unpleasant side effects. Hopefully your husband's neurologist will be able to help him further with his pain medication, when he goes for his appointment. We do have a medical page on Pain Management and Scleroderma, which I hope you'll find helpful and interesting. Kind regards,
  5. Bidirectional association between fibromyalgia (FM) and gastroesophageal reflux disease (GERD): two population–based retrospective cohort analysis. The present study suggests a bidirectional relationship between FM and GERD and there is a greater risk of developing GERD for patients with FM than developing FM for patients with GERD. PubMed, Pain, 2017 Oct;158(10):1971-1978. (Also see Fibromyalgia and Reflux (Heartburn) and GERD) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  6. The International Scleroderma Network thanks Genentech for their sponsorship support. Posted 11/21/2017.
  7. The International Scleroderma Network thanks Genentech for their generous grant to tackle patient education for scleroderma and pulmonary hypertension from 2012 to present. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. CREST Sufferer.

    Hi Tabug, Welcome to these forums! I'm sorry to hear that your husband is suffering from CREST (limited scleroderma ) and is experiencing such unpleasant symptoms. Please note that I have no medical training (except a now out of date first aid certificate ) but I would hazard a guess that possibly the reduction in the prednisolone is causing his muscle stiffness and joint pain to flare up again. Methotrexate can cause a few side effects, particularly when first diagnosed, so that could perhaps not be helping the situation, as could his working conditions. It would be beneficial for him to consult a listed scleroderma expert, as often the peculiar nature of scleroderma requires specialist knowledge and expertise, not always available from an ordinary rheumatologist. I realise that it can take a long time to get a referral appointment, so I would suggest that if he can't see his doctor before 29th January 2018 and is still very distressed and in a lot of discomfort, he contacts the hospital where he was a patient recently and asks them to review his medication, at the very least. I'm in the UK and I find that it can be necessary to be very persistent with my medical team, in order to ensure that everything possible is being done and that I'm getting the best possible treatment. Kind regards,
  9. Selexipag for the treatment of connective tissue disease–associated pulmonary arterial hypertension (PAH). Selexipag delayed progression of PAH and was well–tolerated among PAH–Connective Tissue Disease patients, including those with PAH–Scleroderma and PAH–Systemic Lupus Erythematosus. PubMed, Eur Respir J, 2017 Aug 17;50(2). (Also see Uptravi® (Selexipag) for Pulmonary Hypertension) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  10. It's True: Alcohol Helps You Speak a Foreign Language Better. Those who dabble in learning a new language sometimes find that alcohol – in moderation – helps them speak more fluently. Time Healthland, 10/20/2017. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  11. Targeted proteomics reveals promising biomarkers of disease activity and organ involvement in antineutrophil cytoplasmic antibody–associated vasculitis (AAV). Promising biomarkers of disease activity, disease severity, and organ involvement in AAV with a targeted proteomics approach using serum samples have been obtained. PubMed, Arthritis Res Ther, 2017 Sep 29;19(1):218. (Also see Vasculitis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  12. Pandemic non–adjuvanted influenza A H1N1 vaccine in a cohort of patients with systemic sclerosis (SSc). The non–adjuvanted influenza H1N1 virus vaccine proved to be safe and effective, independent of SSc clinical subtype, disease severity or therapy. PubMed, Rheumatology (Oxford), 09/08/2017. (Also see Vaccinations) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. The FDA Just Approved a New Way of Fighting Cancer Using Personalized Gene Therapy. Immune–based cancer treatments are surging forward as the Food and Drug Administration (FDA) approved the second of a new technology called CAR T, this time to treat diffuse large b-cell lymphoma, a type of non-Hodgkin lymphoma. Time Healthland, 10/19/2017. (Also see Cancer) 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 11/14/2017
  15. The International Scleroderma Network thanks Gilead for sponsorship support to tackle scleroderma and pulmonary hypertension from 2011 to present. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  16. Scleroderma Expert

    I'm really pleased for you, Tararae (I've sorted the name spelling for you! ) It's certainly worth seeing such a knowledgeable consultant; I do hope you have a very productive and satisfactory appointment.
  17. Residual disease activity and treatment adjustments in psoriatic arthritis (PsA) in current clinical practice. Remaining disease activity is present in almost two thirds of patients with PsA when scored by the treating rheumatologist, but triggers treatment adjustment in only a minority. PubMed, Arthritis Res Ther, 2017 Oct 10;19(1):226. (Also see Psoriasis and Psoriatic Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  18. Scleroderma Expert

    Hi Tararae, We have two listed scleroderma experts in Boston: The Scleroderma Center at Boston University School of Medicine (BUMC). and Massachusetts General Hospital. I imagine you'd have to make a prior appointment with either of them, before you go. I'm afraid I can't give you any personal experience of them, as I'm in the UK. Kind regards,
  19. Capillary loss on nailfold capillary microscopy is associated with mortality in systemic sclerosis (SSc). The avascular score was associated with higher risk of death and may be a useful tool in prognostic evaluation of SSc. PubMed, Clin Rheumatol, 10/10/2017. (Also see Diagnosis of Scleroderma Pulmonary Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  20. Scleroderma and Sjogrens

    Hi Luwana, Welcome to these forums! I'm sorry to hear that you've been diagnosed with Sjogren's and scleroderma. Thankfully, I don't suffer with Sjogren's (and I'm hoping that pleasure will be indefinitely postponed), although I have been diagnosed with limited scleroderma for the last eight years. I'm still going strong, though!! We certainly do have other members, who are suffering with both conditions and some of them may be along to support you. We do suggest that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialist knowledge and expertise. Kind regards,
  21. New to Morphea

    Hi Becs, Welcome to these forums! I'm sorry to hear that you've been diagnosed with Morphea which is a type of localised scleroderma. A 2003 large multinational study found that 25% of people with localized scleroderma had at least one other non-skin symptom, such as osteoarticular (affecting bones and joints), neurological (epilepsy, headache, peripheral neuropathy), vascular, gastrointestinal (heartburn), respiratory, cardiac, or renal. Less than 4% of those with morphea had more than two non-skin symptoms and none of the people in the study developed systemic scleroderma during follow up. Morphea can burn itself out after 3 to 5 years, even without treatment. There are various Treatments for Morphea. The current recommended first line treatment, in most cases, is UVA1 Phototherapy. We do recommend that our members consult a listed scleroderma/dermatologist, as this disease does require specialist knowledge and expertise. Kind regards,
  22. Breast Cancer Awareness: Death rates decline. The American Cancer Society reported earlier this month that breast cancer death rates declined almost 40 percent between 1989 and 2015 and the reduction is attributed to screening and early detection by self–exams, mammography and improvements in treatments over the recent decades. Washington Times, 10/20/2017. (Also see Cancer) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. Activating and inhibitory receptors on natural killer cells in patients with systemic lupus erythematosis (SLE)–regulation with interleukin-15. Natural killer (NK) cells may play an important role in the pathogenesis of SLE. PubMed, PLoS One, 2017 Oct 12;12(10):e0186223. (Also see Causes of Lupus and Natural Killer Cells) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  24. Would you like to help scientists find a cure for scleroderma? Dozens of clinical trials for scleroderma and pulmonary hypertension are actively recruiting now. Review them and be sure to ask your scleroderma expert about the ones you are interested in. (Also see Current Clinical Trials and Scleroderma Experts) Posted 11/09/2017.
  25. Would you like to help scientists find a cure for scleroderma? Dozens of clinical trials for scleroderma and pulmonary hypertension are actively recruiting now. Review them and be sure to ask your scleroderma expert about the ones you are interested in. Posted 12/09/2014. (Also see: Current Clinical Trials and Scleroderma Experts) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
×