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Joelf

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Everything posted by Joelf

  1. Case Reports: Skin and mucous membranes' manifestations of dermatological diseases within the genital area in females. While analyzing the available scientific reports, the physician in charge must adjust therapeutic options individually, in the case of dermatological diseases within the female genital region. PubMed, Postepy Dermatol Alergol, 2018 Apr;35(2):199-203. (Also see Lichen Sclerosus et Atrophicus) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. Prognostic Factors of Renal Involvement in Systemic Sclerosis (SSc). In SSc patients, a periodic follow–up based on clinical and laboratory evaluation, colorDoppler ultrasound and, in some cases, renal biopsy is required to evaluate renal involvement. PubMed, Kidney Blood Press Res, 2018 May 10;43(3):682-689. (Also see Kidney (Renal) Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  3. Joelf

    Why do we panic?

    Hi Stcherry, Welcome to these forums! I'm sorry to hear that you're suffering with so many health problems. However, I would wholeheartedly endorse your policy of finding out as much as you can about your various conditions and then suggesting ways and means of supporting your doctors, to enable them to help you in the best possible way. I find your attitude most refreshing and you sound like a person after my own heart, as one of my simple pleasures is telling helping my medical team to do their job. It is so important to take control and be aware of all the details of these complex diseases. I do hope that when you see your gastrologist and receive the results of your manometry test, your worst fears will not be realised. However, if they are and you find that you're having to add scleroderma to the mix, I'm sure that your positive attitude will go a long way towards helping you to cope with it and obtain the best treatment for it. Kind regards,
  4. Shorter drug treatment OK for many breast cancer patients. Many women with breast cancer that is treated with Herceptin can get by with six months of the drug, greatly reducing the risk of heart damage it sometimes can cause, a study suggests. NBC News, 05/16/2018. (Also see Cancer) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  5. Therapeutic Applications of Mesenchymal Stem Cells (MSCs) for Systemic Lupus Erythematosus (SLE). The immuno–modulatory and regenerative characteristics of MSCs make them as one promising candidate for treating SLE. PubMed, Adv Exp Med Biol, 05/17/2018. (Also see Stem Cell Transplantation) 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 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.
  7. The International Scleroderma Network thanks Gilead for their sponsorship support. Posted 06/14/2018.
  8. Joelf

    Morphea and Lupus?

    Hi Amber, Welcome to these forums! I'm sorry to hear that you've been suffering rather unpleasant symptoms. Unfortunately, the diagnosis for autoimmune diseases is both difficult and frustrating, as they tend to affect everyone differently. It is possible to have scleroderma and lupus overlap, which can have some of the features of each disease and this is probably to what your rheumatologist was referring. UVA1 phototherapy is now the recommended first-line treatment for morphea, although methotrexate and glucocorticoids have been used with some success. Like you, I have to take steroids and when I first started taking them, I thought they were some sort of miracle; they had me swinging off the chandeliers and having felt terrible for quite a while, I couldn't believe the improvement in the way I was feeling. However, having been taking them for the last nine years, I'm not nearly so ecstatic about them as I was!! Unfortunately, I've had nearly all the side effects listed, including weight gain, thinned skin and worst of all, avascular necrosis in my hips, but I still consider that the side effects (in my case) are worth it, as I have lung involvement and would probably die without them, which tends to concentrate the mind wonderfully! My liver enzymes have been up and down sometimes, but that was mainly due to the immunosuppressant (azathioprine) which I also take and after tinkering around a little with the dosage, I managed to get that under control. Steroids should be used with care for scleroderma patients and we do have a medical page for Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma. We do recommend that our members consult a listed scleroderma expert, as this complex disease does require specialist knowledge and expertise and one of the main problems is that the average rheumatologist/dermatologist and primary care doctor see very few cases and are therefore not in a good position to advise you of the best treatment to adopt. Kind regards,
  9. Joelf

    Initial diagnosis of Scleroderma?

    Hi Diantha, As this is such an old thread, it's unlikely you'll receive a reply; however, I've included a link to Amanda's Story in our Patient and Caregivers Stories and also her profile page which will explain the heart involvement with which she is suffering. Kind regards,
  10. Joelf

    Fearing Dentist Appointment

    Hi Barefut, How lovely to hear from you again and also read your cracking blog, although I'm sorry that you're suffering in the tooth department. As you've ascertained, it's likely that your new dentist has never had to deal with anyone with scleroderma before, although a competent dentist should be aware that not everyone can open their mouth to the fullest extent and so therefore he/she should be able to treat you successfully. We've got lots of information on our Dental Involvement page. My dentist is quite good; when I first started taking alendronic acid (to counter side effects from prednisolone) she recoiled in horror and refused to do any extractions herself (necessitating an expensive operation from a "specialist dentist" - hmm!) I've since had quite a lot of things done (including a partial plate of false teeth) and had no problem; the thing that hurt the most was paying the bill for anything that isn't covered on my dental insurance!! Possibly the antibiotics could be necessary, as you haven't been to the dentist for a long while and might need more invasive treatment. I'm on immune suppressants, but have not needed antibiotics, unless I've had a real problem. I do hope that your upcoming visit to your new dentist is not as fearsome as you expect and that you will be able to post and tell us that everything went well. Best wishes,
  11. Here's an extract from Barefut's latest blog: June 13th 2018 I awaken and for the 3-4th time, it takes me at least 30 seconds to get my head straight and realize I am not in my room at the home I grew up in. As the fog lifts from my sluggish brain, my dream comes shooting back to me in bits and pieces - different dream but same place and same theme as always. Maybe I should mention that to my therapist?..........Read More! We have another thought provoking and interesting blog for everyone to enjoy.
  12. Anti–endothelial cell antibodies (AECA) do not correlate with disease activity in systemic sclerosis (Ssc). AECA are not associated with the activity of SSc, although the presence of AECA might be an indicator of vascular complications development in Ssc. PubMed, Postepy Dermatol Alergol, 2018 Apr;35(2):185-191. (Also see Antibodies) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. Joelf

    Newly diagnosed, maybe.

    Hi Celine, Welcome to these forums! I'm sorry to hear that you're experiencing so many worrying symptoms; I also have the PM/Scl antibody, but thankfully at present I don't seem to be suffering with polymyositis (and I'm hoping that pleasure will be indefinitely postponed! ) I would echo Shelley's advice to, if possible, consult a listed scleroderma expert, as such complex diseases as scleroderma and possible polymyositis do require specialist knowledge , which is sometimes beyond the expertise of the common or garden rheumatologist. It could perhaps enable you to get to the bottom of the troubling health problems, which you're having to cope with at present. Kind regards,
  14. How Exercise Can Help You Recall Words. Researchers recently looked into the relationship between aerobic fitness and word recall. New York Times, 05/15/2018. (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.
  15. Early Diagnosis and Treatment of Rheumatoid Arthritis (RA). This article provides a current overview of our understanding of rheumatoid arthritis, with an emphasis on early diagnosis and approaches to treatment. PubMed, Prim Care, 2018 Jun;45(2):237-255. (Also see Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  16. 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.
  17. 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 06/09/2018.
  18. Joelf

    CREST antibodies

    Hi MCS, Welcome to these forums! I'm sorry to hear that you have been experiencing worrying symptoms and are concerned that you might develop CREST. Regarding your positive antibodies, I would reiterate the advice we always give about positive blood tests; although they help in the diagnostic process, they are by no means 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. I would just say that I have no medical training, apart from a now out of date first aid certificate. I can understand that you're keen to do everything you can to help yourself regarding your lifestyle and diet; we do have a medical page on Alternative Therapies, which I'm hoping you'll find helpful and informative. However, I would add the caveat that we always advise our members that in general, most doctors recommend that scleroderma patients follow a normal, well-balanced diet , without the addition of any supplements, herbs, vitamins, or minerals. There's no reason why you can't incorporate many healthy, natural things for systemic scleroderma, but you should always get the approval of your medical team before embarking on any new/different therapies or medication, particularly as you have other autoimmune conditions such as Hashimoto's and PCOS to contend with as well. Kind regards,
  19. Joelf

    Scleroderma fears

    Hi Diantha, Welcome to these forums! I'm sorry to hear that you have concerns about your health. Whereas I can understand that you're feeling very concerned about the symptoms you're experiencing, the symptoms you describe could equally relate to any number of health issues, including other autoimmune diseases. Unfortunately complex diseases such as scleroderma can be notoriously difficult to diagnose, not least because they affect all sufferers differently and cover such a varied spectrum. High blood pressure is not the same as pulmonary hypertension and the pain, tingling and swelling in your feet and peeling fingers may possibly relate to something completely different. I'm afraid that the journey to a scleroderma diagnosis can be long and frustrating and because of the complexity of the disease, 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. Please understand that I have no medical training, apart from a now out of date first aid certificate, but I would reiterate the advice we always give about positive blood tests; although they help in the diagnostic process, they are by no means 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 and it could be that you'll require further medical tests to try and determine the cause of the shortage of breath and inflammation on your lungs. However, one thing that is certain to exacerbate any disease is the stress and anxiety you're feeling whilst waiting for a diagnosis. Although it is worrying to have the uncertainty hanging over you, 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,
  20. Methyl-CpG-binding protein 2 (MeCP2) mediates antifibrotic effects in scleroderma (SSc) fibroblasts. This study demonstrates a novel role for MeCP2 in skin fibrosis and identifies MeCP2-regulated genes, which can be potentially targeted for therapy in SSc. PubMed, Ann rheumatologist Dis, 05/14/2018. (Also see Fibroblasts and Skin Fibrosis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  21. Joelf

    Watermelon Stomach sufferer

    Hi Gill, Welcome to these forums! I'm sorry to hear that you've been suffering with Watermelon Stomach and have had to undergo so many unpleasant procedures. Thankfully, I've not had to deal with Watermelon Stomach (and I'm hoping that pleasure will be indefinitely postponed! ), so can't advise you from my own experience. I've found a couple of old threads which might be of interest to you. Hello, I'm back (Watermelon Stomach) Watermelon Stomach (GAVE) Kind regards,
  22. Malaria genetics: study shows how disease became deadly. The secrets of how malaria became a human–killer have been revealed by a genetic study. BBC News, 05/22/2018. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. In loving memory of Peter J. Devlin, a donation has been made by Joseph Zagari, and by Margaret and Dave Lumia, to the nonprofit International Scleroderma Network. (Also see Sclero Shop/Donate) Posted 06/08/2018. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  24. Pulsed electromagnetic field (PEMF) therapy in the treatment of pain and other symptoms in fibromyalgia: A randomized controlled study. This study demonstrated that low–energy PEMF therapy was not efficient in reducing pain and stiffness or in improving functioning in women with fibromyalgia. PubMed, Bioelectromagnetics, 04/30/2018. (Also see Fibromyalgia) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  25. Did you know you can help raise scleroderma awareness? The nonprofit International Scleroderma Network offers scleroderma awareness bracelets! Bracelets for just $2.50 each with free shipping and handling! They say "scleroderma" on one side and "sclero.org" on the other.(Also see: Donate Now) Posted 12/07/2014. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
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