Jump to content
Sclero Forums

All Activity

This stream auto-updates     

  1. Last week
  2. Hello, everyone-- I am recently diagnosed with limited scleroderma and am trying to figure out the ways to manage symptoms (mostly joint and finger pain as well as Raynauds) and doing a lot of reading. I understand that this is because of an overabundance of collagen in the joints, and that it's not curable, but manageable. I'm doing food elimination testing to see if I can find foods that cause increased inflammation and limit those. My question is about collagen peptides. I have been using them as a supplement for a year or so, to help with digestion, skin elasticity, etc. I am wondering whether they are actually problematic for me to be using-- I am assuming collagen that you ingest is different from the collagen in your joints, but I'm just not sure if one leads to another, or if I'm just overthinking things. I brought it up with my rheumatologist, but she didn't seem to be familiar with peptides, and told me it was "probably ok." Has anyone else had these kinds of questions? Sorry, I just don't have a place where I can ask these sorts of questions! Thank you, in advance, for any help you can offer--
  3. Hi Joe2, Has anything improved your myositis? I too am feeling muscle fatigue in one arm that just came on suddenly. Recently noticed muscle atrophy in my calfs. I too was very fit and my leg muscles were my best attribute. It is crazy because I have not had any symptoms of scleroderma as I was recently diagnosed and coincidentally since I started taking Cellcept I started feeling all kinds of issues to my muscles (spasms & atrophy) and nerves. I just think it is odd that all these symptoms have came about shortly after my diagnosis and put on Cellcept.
  4. Thank you! I don't know if you are the founder of this site but I think it is very admirable of you to provide a forum for us to feel supported. it means a lot to me to at least release what I am feeling even if no-one responds. I was recently diagnosed and sometimes feel hopeless and alone and don't know who to turn to because no-one really understands how afraid I really feel. I am wondering if I need to be put on anxiety meds but don't want to mix drugs but feel really depressed lately since I have feeling some weird symptoms with this diagnosis. Thank you again!! :>
  5. Can Artificial Sweeteners Keep Us From Gaining Weight? Sugar substitutes may help stave off weight gain, but they have metabolic effects that some experts find concerning. New York Times, 08/20/2020. (Also see Food Guide) 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 Network for Good donors for their support! Posted 09/12/2020.
  7. Hi Mary, Sorry to hear that you're suffering with crepey skin; I've not heard of it being a particular feature of scleroderma, although skin problems are very common. I've included a link to our medical page on Skin Involvement, which I hope you'll find helpful and informative. Kind regards,
  8. Has any anyone experienced extreme crepey skin with systemic scleroderma? I know it effects your tissues and assuming it is effecting my collagen but I feel this is suddenly happening all over my arms and legs and looks awful. Is there a way to reverse or get rid of it? It is also making me lose muscle mass. Any treatment that could help this? It is pretty scary at the rate this is happening. Thanks!
  9. Earlier
  10. Hi Mary, Welcome to these forums. I'm sorry to hear that you've been recently diagnosed with systemic scleroderma. I'm pleased that you're consulting the Mayo Clinic as the expert rheumatologists there are really the best people to give you specialist advice and help. I've included a link to our medical pages, to give you some more information. Kind regards,
  11. Hi Aimee, Welcome to these forums. I'm sorry to hear that you are suffering unpleasant symptoms due to morphea and I've included a link to our medical page on the subject, to give you more information. Since you've been dealing with this condition for a number of years, I assume that you have consulted a listed scleroderma/morphea expert. He would be the best person to give you specialist advice and help, as scleroderma morphea is a complex disease and requires knowledge and expertise in order to be dealt with correctly. Kind regards,
  12. Effects of exercise programmes on pain, disease activity and function in ankylosing spondylitis (AS): A meta-analysis of randomized controlled trials. For patients with AS, exercise programmes improve pain, function and disease activity. PubMed, Eur J Clin Invest, 2020 Jul 19;e13352. (Also see Ankylosing Spondylitis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. I am new to this site and newly diagnosed with Systemic Scleroderma. As probably everyone of you, I have a million questions. About 2 months ago I saw some excessive hair loss and decided to go to the dermatologist who then referred me to a rheumatologist based on my high ANA numbers, where I was confirmed with Systemic Scleroderma. My doctor ordered internal functional tests as well as an endoscopy since I have had GERD for many years. All tests came back good, GI doctor found intestinal metaplasia. He gave me pantoprazole and said to come back in a year for another endoscopy. Found a year to be too much time to wait to do another endoscopy so getting another opinion on that. My rheumatologist prescribed 500 mg CellCept (4 a day). Around this time I started feeling an unexplainable feeling almost like a tingling/tightening (sensitivity) on and off in parts in my face, forearm and thighs, it is also often itchy. I even wake up with my hands tingling. Strange that I was JUST diagnosed and I am feeling weird things already. I was assuming it was the Cellcept so my doctor said to stop it for a week to see if it goes away but it didn't, so I started to take it again. I then thought it could have been side effects from the pantoprazole so I stopped taking that for a while as well but this feeling didn't go away. I even started feeling that my skin is looking crepe-like in my hands thighs and calfs with noticeable muscle loss (possibly muscle atrophy). I went to a neurologist and they will be doing some nerve testing next week. I have also had a sore throat since around the time diagnosed as well, with periodic burning sensation on my tongue and bumps on the side and back of my tongue. I live in Tampa Florida and there are really no Scleroderma specialists here, so I made an appointment at Mayo Clinic for next week; hopefully I can get some real answers and even a second opinion on this disease as I know these auto immune diseases can often be misdiagnosed. I am wondering has anyone else had any of these symptoms, if so, would love to learn more about them. I am not sure if this is related to medications or truly symptoms of this disease. Thank you!!
  14. Hi Aimee. Whilst I do not know too much about Morphea, I would urge you to continue to exercise as much as possible. If one side differs, there are many exercises that will only impact of one side giving you the balance you want Please also consider that symptoms are often caused by the side effects of any medication rather than the underlying disease itself. You might also like to familiarise yourself with the sections of this website relating to morphea. Regards, Dimarzio.
  15. Hello, I’m Aimee, I am 20 years old and have had morphea since I was 6. I have a patch extending from under my armpit to below my breast, as well as another separate patch in the middle of my left abdomen. While it doesn’t bother me in any way, I have had my muscle eaten away under my morphea and this affects me a lot. Because it is across the left side of my trunk, any form of muscle building exercises will instantly give me problems since my right side tends to bulk more in order to compensate for my left weakness. If I work out my arms my shoulders get tense, my legs then my hips are uneven, my core then my back is in pain, doing cardio gives me a sharp pain in my lung making it hard to breath. So I’ve dropped exercise altogether. Is there anything that can be done for this? Also along with morphea I believe I have developed anemia, brittle nails, gastroparesis, and sebopsoriasis as a result from the morphea. I began taking iron, hydroxychloroquine, zinc, and biotin pills along with a calcipotriene topical on my morphea and ketoconazole on my scalp and face. I used to weigh 120lbs, my height being 5”7, but I’m spontaneously dropped to 111 and find myself full so quick after 3 bites into a meal. My eyes brows and the sides of my nose, not to mention my ears, all have scales and red irritations surrounding them. I am constantly cold and always have to take a second to not topple over when I stand up.Regardless of how much I build up my nail strength, they will still chip by the end of the day. I am a happy individual who is not ashamed or embarrassed of my condition at all however, for a body in the prime age of 20, I feel more old, staggered, and falling apart than I should. Is there anyone who has the same “side symptoms” from their morphea? Is there anyone that can offer some advice for better handling any of them?
  16. Targeting the α7 nicotinic acetylcholine receptor - a novel road towards the future treatment of skin diseases. Emphasis on translational research targeting the α7nAChR in skin may lead to the development of new treatment and prevention modalities against fibrosclerotic skin diseases. PubMed, Exp Dermatol, 08/11/2020. (Also see Skin Fibrosis) 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 09/09/2020.
  18. Are Mammograms Worthwhile for Older Women? Some might be better off not knowing they have breast cancer because they are likely to die of other causes long before breast cancer would threaten their health. New York Times, 08/17/2020. (Also see Cancer) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  19. Clinical outcomes of hospitalised patients with COVID-19 and chronic inflammatory and autoimmune (IA) rheumatic diseases: a multicentric matched cohort study. In hospitalised patients with chronic inflammatory rheumatic diseases, having a connective tissue disease but not IA nor previous immunosuppressive therapies was associated with severe COVID-19. BMJ Journals, Annals of Rheumatic Diseases, 08/12/2020. (Also see Autoimmune Rheumatic Diseases) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  20. 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 Get Scleroderma Awareness Bracelets) Posted 09/07/2020.
  21. CD47 prevents the elimination of diseased fibroblasts in scleroderma. Our study demonstrates the efficiency of combining different immunotherapies in treating scleroderma and provides a rationale for combining CD47 and IL-6 inhibition in clinical trials. PubMed, JCI Insight, 2020 Aug 20;5(16):140458. (Also see Fibroblasts) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  22. Singing 'no riskier than talking' for virus spread. Singing does not produce substantially more respiratory particles than speaking at a similar volume, a study suggests. BBC Health News, 08/20/2020. This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  23. The International Scleroderma Network thanks United Therapeutics for their sponsorship support. Posted 09/06/2020.
  24. That's odd. Not necessarily the outcome you would have expected. Though the protection Nicotine seems to provide against COVID infection is equally strange.
  25. Respiratory diseases as risk factors for seropositive and seronegative rheumatoid arthritis and in relation to smoking.. Respiratory diseases increase the risk for both seropositive and seronegative RA, but only among nonsmokers. PubMed, Arthritis Rheumatol, 08/16/2020. (Also see Symptoms and Complications of Rheumatoid Arthritis) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  26. Biomarker profiles of endothelial activation and dysfunction in rare systemic autoimmune diseases: implications for cardiovascular risk. Chronic inflammatory connective tissue diseases -specific biomarker profiles revealed an anti-angiogenic, interferon-driven environment during active disease. PubMed, Rheumatology (Oxford), 2020 Aug 18;keaa270. (Also see Vascular Involvement) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  27. Shop at AmazonSmile and Amazon will make a donation to the nonprofit International Scleroderma Network. Posted 09/04/2020.
  1. Load more activity
×
×
  • Create New...