Jump to content
Sclero Forums

Joelf

Administrators
  • Content Count

    4,995
  • Joined

  • Last visited

4 Followers

About Joelf

  • Rank
    Star Ruby Member

Profile Information

  • Location
    West Sussex

Recent Profile Visitors

6,026 profile views
  1. Tocilizumab and the Risk of Cardiovascular Disease (CVD): Direct Comparison Among Biologic Disease-Modifying Antirheumatic Drugs for Rheumatoid Arthritis (RA) Patients. Tocilizumab was associated with a CVD risk comparable to that for etanercept as well as a number of other biologics used for the treatment of RA. PubMed, Arthritis Care Res (Hoboken), 2019 Aug;71(8):1004-1018. (Also see Treatments for Rheumatoid Arthritis and Clinical Trials) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. Performance of a new quantitative computed tomography index for interstitial lung disease (ILD) assessment in systemic sclerosis (SSc). This new composite CT index for SSc-ILD assessment could be sufficiently sensitive for capturing early lung density changes in visually ILD-free patients. PubMed, Sci Rep, 2019 Jul 1;9(1):9468. (Also see Pulmonary Fibrosis Diagnosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Hi Daughter Ang, The type of interstitial lung disease (ILD) I have is called non specific interstitial pneumonia (NSIP), which, if you've going to get pulmonary fibrosis, is the best sort to have! The reason is that it is a fibrosing organising pneumonia which is reversible if caught early enough. Thankfully, as I was extremely fit at the time, I noticed straightaway that I had breathing problems which I shouldn't have had. I went to my general practitioner who was on the ball and after a chest X-ray she referred me to a local lung consultant (who was also on the ball) and she referred me to The Royal Brompton Hospital ( which is a top lung specialist hospital). They did every lung test known to man on me and then I had six months treatment with a rather unpleasant, but effective, drug called cyclophosphamide. I was then put on an immunosuppressant and steroids and have been on them ever since (although I'm now in the process of weaning them down with a view to coming off them completely.) I would emphasise that each case of ILD is different and so is the treatment, so the fact that your mother isn't actually receiving any treatment at this time isn't necessarily a problem. The reason I had such aggressive treatment was because a) it was reversible if caught early enough and b) the inflammation was galloping on in my case and they were afraid that it would become permanent fibrosis and therefore untreatable, if not dealt with quickly. I also had lots of other symptoms which at the time I hadn't realised were scleroderma, but I was also referred to The Royal Free Hospital, where they are top scleroderma experts, so all in all I have been very lucky. Kind regards,
  4. Social media is harmful to teen girls’ mental health: What you should know. Teenage girls are affected by social media use more than boys, with the harmful effects being driven by three factors, according to a new study. GMA Wellness, 08/14/2019. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. Hi Becky, Welcome to these forums! In answer to your query, scleroderma is a complex and difficult to diagnose disease and there are only a few specialists who have the knowledge and expertise to deal with it. I've included a link to our listed scleroderma experts. Regarding your problem of actually getting an appointment with one, I can only suggest that you will have to be very persistent. Kind regards,
  6. Hi Daughter Ang, Welcome to these forums to you and your mother. I'm sorry to hear that your mother has been experiencing worrying symptoms and has a possible diagnosis of scleroderma hanging over her. I can understand how anxious you're both feeling and of course, it's not possible for me to be able to predict your mother's prognosis regarding the disease. We do recommend that our members, if possible, consult a listed scleroderma expert, as this complex disease does require specialist knowledge and expertise. I've included a link to our expert in Canada. Because of the very unpredictable nature of scleroderma, it does affect everyone differently; however, to give you some perspective, I have limited scleroderma with what was in the beginning serious lung involvement and after being successfully treated by a top lung hospital (I'm in the UK) I'm happy to say that my lung function is now better than the average persons' (my consultant told me they could pull people in off the streets with much worse lung function than me!) Thankfully, I've never had any gastrointestinal problems, but I've known friends who have and they are able to lead a comparatively "normal" life, so a diagnosis of scleroderma is certainly not necessarily a death sentence. I've included links to our medical pages on Lung Involvement, Gastrointestinal Involvement and Raynaud's, to give you a little light reading and hopefully allay your fears a little (googling "scleroderma" is actually not a good idea as there is a lot of inaccurate and scaremongering stories about it on the internet.) It's possible that other members will be able to give you some more information about their own cases. Kind regards,
  7. Prevalence and risk factors for osteoporosis in individuals with chronic obstructive pulmonary disease (COPD): a systematic review and meta-analysis. Osteoporosis is prevalent in individuals with COPD and the prevalence appears to be high and similar in many countries. PubMed, Chest, 07/25/2019. (Also see Osteoporosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  8. Hi PleaseHelpMe, Welcome to these forums! Please note I have no medical training. I can understand your concern when taking a cocktail of medication, but actually I would never advocate simply stopping taking the drugs, without the prior consent of your doctors. However, the scenario you describe can happen, as blood tests can vary enormously, particularly over time and it is possible to have different results from each set of blood tests. This is why simply diagnosing scleroderma and other autoimmune diseases on the strength of the blood test results is very unreliable. Please see our sticky on the subject. On a personal note, my blood tests have shown the same difference since I was first diagnosed ten years ago; at that time I had a plethora of different antibodies, but at my last blood test, the ENA screening was negative. No doubt, I still have the disease but it has certainly stablised and I am now gradually weaning my medication down, with a view to coming off the drugs completely. I would suggest that as you appear so concerned about it, that you speak to your doctor/ rheumatologist and let them advise you of any further action you should be taking. Kind regards,
  9. A comprehensive analysis of antigen-specific antibody responses against human cytomegalovirus (HCMV) in patients with systemic sclerosis (SSc). More prevalent and/or stronger antigen-specific HCMV responses are noted in SSc compared to controls, implying a role of these viral responses in SSc development. PubMed, Clin Immunol, 07/29/2019. (Also see Antibodies) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  10. The International Scleroderma Network thanks Jack and Elizabeth Lewis for their monthly pledge support! Posted 09/16/2019.
  11. Don't worry about drinking microplastics in water, UN says. The World Health Organization says the levels of microplastics in drinking water don't appear to be risky, but that more research is needed. NBC Health News, 08/22/2019. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 09/14/2019.
  12. Imbalance between CD8+CD28+ and CD8+CD28- T-cell subsets and its clinical significance in patients with systemic lupus erythematosus. These data suggest that high expression of Fas, FasL and IL-6 and low expression of CTLA-4 by the CD8+CD28+ T-cell subset promotes the activation-induced cell death of the CD8+CD28+ T-cell subset. PubMed, Lupus, 2019 Aug 9:961203319867130. (Also see Causes of Lupus and B Cells and T Cells) The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 09/14/2019.
  13. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 09/14/2019.
  14. IL-16 expression is increased in the skin and sera of patients with systemic sclerosis. The regional up-regulation of IL-16 in the skin is not only associated with skin sclerosis, but also with systemic IL-16 activation. PubMed, Rheumatology (Oxford), 08/03/2019. (Also see Skin Fibrosis and Interleukins) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  15. Hi Kaybee, Welcome to these forums! I'm sorry to hear that you have concerns about sclerodema. We have many members (including myself) who have first hand experience of dealing with scleroderma, so hopefully you'll find lots of help and support from this community. Perhaps if you could let us know the problems and symptoms with which you're suffering, we can give you more specific advice. Meanwhile, I've included a link to our medical pages, to give you a little light reading. Kind regards,
×
×
  • Create New...