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Found 35 results

  1. A patient-centered approach to the burden of symptoms in patients with scleroderma treated with Bosentan: A prospective single-center observational study. Bosentan therapy may indirectly influence functionality and quality of life in patients with scleroderma by reducing the burden of Raynaud's and digital ulcer-related symptoms. PubMed, Exp Ther Med, 2020 Mar;19(3):1739-1746. (Also see Tracleer (Bosentan)) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  2. Hi, I'm looking for a Rheumatologist in Phoenix/Mesa area who specializes or is knowledgeable in SSC.
  3. I have severe Raynaud's with limited scleroderma. I really need some suggestions on what gloves to wear for inside use. Gloves that would keep hands warm and be practical enough for use with daily activities. I recently had to cut my visit short at my daughter's home because my fingers turned blue constantly, even wearing knitted gloves. Thank you for your support!
  4. I have sore hands this year more than other years. My scleroderma is hitting me hard and it has been cold and stormy here. My rheumatologist suggested I put a thick layer of lotion on my hands, put on cotton gloves when I go to bed and all the lotion will be absorbed. It is doing the trick; my hands look much better and not as painful. I had a sore that he thought might turn into an ulcer and it is now gone away. I hope this can help others. I wear the gloves doing my daily routine and I am glad I gave it a try. Blessings to all.
  5. Factors influencing Raynaud's condition score diary outcomes in systemic sclerosis. Patient–reported assessment of SSc–RP severity is associated with a number of factors including pain, catastrophisation and coping strategies. PubMed, J Rheumatol, 03/01/2019. (Also see Raynaud's) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles. 
  6. Evolving symptoms of Raynaud's phenomenon (RP) in systemic sclerosis (SSc) are associated with physician and patient–reported assessments of disease severity. Patients identify with distinct patterns of SSc–RP that may relate to progression of the obliterative microangiopathy of SSc. PubMed, Arthritis Care Res (Hoboken), 08/21/2018. (Also see Raynaud's Phenomenon) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  7. Started on Plaquenil at 200mg a day for 2 weeks, and have been on 400 mg a day for a little over a week - which is my maintenance dose. I have been feeling extremely fatigued, but now also am having terrible mood changes and feel terribly depressed at times. I am concerned that if I stop taking the Plaquenil, I will start having more episodes of acute arthritic arthritis - which are terribly painful and usually put me in hospital. I have not been offered any alternatives. I have had scleroderma for approx 20 years without being given any DMARD's.
  8. The effects of upper and lower limb exercise on the microvascular reactivity in limited cutaneous systemic sclerosis (SSc) patients. Our results suggest that arm cranking has the potential to improve the microvascular endothelial function in SSc patients. PubMed, Arthritis Res Ther, 2018 Jun 5;20(1):112. (Also see Raynaud's: Rewarming Tips) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  9. Hello. First post here. I am having some concerning symptoms and blood work and my various web searches have brought me to this forum. I am 42 years old and have had Hashimoto's thyroiditis for about 25 years. I have been taking thyroid medication since then and have monitored it closely. My current symptoms are mild Raynaud's, mild dry eyes/mouth and fatigue. I also have a serious case of Oral Lichen Planus which began about 3 months ago and is only getting worse and more bothersome. I am prone to tendonitis which resolves with rest. I do not have any skin thickening, joint pain, digestive or lung issues at this time. It was the Lichen Planus that caused an ENT to check my ANA and when that came back positive I saw a rheumatologist to investigate further. My blood work shows a low positive ANA (1:80), positive ACA (around 3), Hashimoto's antibody (can't remember the name) and deficiencies in the c3 and c4 complements (associated with lupus). I am negative for all of the antibodies that typically point to Sjogrens or Lupus. My rheumatologist just gave me the diagnosis of Undifferentiated Connective Tissue Disease (which from what I understand means she doesn't know what is going on but it could turn into something specific in the future). She is most concerned about the low complements. She was not particularly concerned about the ACA which surprised me. I find that very scary from what I've read! She says that the Lichen Planus is unrelated and says it should just be treated with steroid creams. But Lichen Planus is also an autoimmune disease from what I understand. I am going to re-run my blood work in early Jan and then see her again to consider whether or not I should go on Plaquenil. She said it might help with the fatigue and possibly prevent some problems in the future. At this point I am feeling very lucky that I am not feeling too bad but at the same time I am scared about what the future holds. I have 4 young kids and I'm worried how this might impact them. I know that no one can diagnose me over the internet but if anyone has any insights or suggestions on what I should ask my doctor, or perhaps additional tests I should ask for, I would be very grateful. Thank you so very much!
  10. I have read many different treatments for digital ulcers on this website and others. Currently I am in the middle of switching Rheumatologist since my current Dr. does not feel he is qualified. I am being transferred to KU Med, one of the best in Kansas. But I will not be seeing him until the 11th of next month. I also broke my ankle and just got over a staph infection where they inserted the plate into my tibia. It left a hole in my ankle so I am seeing a wound treatment facility for that. I asked them how to treat the ulcers and they said to paint them with betadine which helps along with building a shell around the ulcer. BUT it does not appear to actually be healing. I will ask my new Dr. how to treat them but in the meantime I cannot take calcium channel blockers since I swell up from the waist down. I am on Sildenafil and Niacin. I was wanting to know if anyone has any other treatment suggestions I can mention to my current Dr. that has been successful to treat the ulcers and help them to heal faster. This has been a 6 month ordeal so far and I am not getting any worse but I do not seem to be healing either. Any suggestions I can run past my current Dr. and make sure they are ok for me to try? I know the best way is to avoid them but since I am new to Scleroderma and Raynaud's I didn't even know what they were so preventive is a little late now but in the future I have lots of information. Thank you for any suggestions.
  11. My toes are cold and sore most of the time and they have a tendency to get sores. Our little dime store here in town had toesy socks for 1 dollar, so I tried them; my sore toes no longer rub against other toes, cutting down on pain in my feet and the sores heal a lot faster I even wear them to bed; also when it is cold outside I put a regular pair of socks over the top of my toes which keeps them stay toasty warm. I send out good thoughts to everyone.
  12. Mosaic capillaroscopic findings in systemic sclerosis. As typical capillaroscopic findings are diagnostic in clinical context, this case of a "mosaic" pattern should remind the clinicians that the capillaroscopic examination should be performed for the eight fingers bilaterally. PubMed, Wien Med Wochenschr, 02/01/2018. (Also see Nailfold Capillaroscopy and Secondary Raynaud's: Scleroderma) This item was posted in the ISN Newsroom. Please check the newsroom daily for updates on scleroderma and other related articles.
  13. I developed sores on my fingers which progressed within a 4 to 6 day period. My family physician asked if I had gotten any concrete on me and I actually did have 3rd degree burns from concrete. Pain developed in my fingers so I decided that as it was on my skin we will try a dermatologist. After blood tests he diagnosed me with various conditions which could be fatty calcium deposits or clotting cascade or possibly prothrombin mutation.There is no set of test that clearly define what actually caused the ulcers. My ANA is above 1:80, Jo, you seem very knowledgeable how do you say that combo of numbers? My albumin was .1 low and my Alpha 1 was .1 high all other test were in normal range. No other tests were performed. I questioned him and he suggested I get a second opinion. He upped my amlodipine from 5 to 10mg, took me off lisinopril. My legs swelled up although the ulcers were fading. I have never been one to give up lay down or get depressed over anything so I have literally spent the last 4 days on the internet learning everything I could and one main thing is I do not think there is a rheumatologist in existence who would bet their life on a scleroderma diagnosis. They take the symptoms and tests results and do a best guess. It seems to me there are about 60-70 physical, physiological and environmental and possibly hereditary reasons to get any of the forms of Raynaud's. I have an entire notebook written with do's and don'ts; helpful information and 3 pages of questions for my next visit. I did have to call about getting my amlodipine put back to 5mg. The swollen legs and stiff joints were so bad in 3 days I had difficulty walking down stairs one at a time. I had a broken ankle with a staph infection but as soon as we get the ok from the wound treatment I go on Mycophenolate (an immunosuppressant) so we need to make sure staph is gone 100% and once we get a letter to my insurance company I will go on Revatio. All of this happened within a 2 week period from the sores developing to them starting to go away and pain subsiding. The most important thing I have learned is it's life; yes I have something but it will not define who I am. I have read 1000's of post on many website, watched videos on Johns Hopkins etc. but the point is I took control. Some anxiety, of course, when I seen some of the life expectancy charts but even then, what can I do but push on to become as knowledgeable as possible and continue to keep my doctor updated. Since at the moment my only treatment has been the removal of lisinopril for probably 2 more days. I am measuring my ulcers with a caliper every day and recording the size. Pain has come back in full force but ulcers are still declining slightly. I feel I have a very good grip on my knowledge of possible treatments, what to look for what to avoid etc. that I can manage this and live a normal life. Please keep your heads up and gain as much knowledge as you can. Have your questions written down and ready to ask. Good luck to you all
  14. I have ulcers on fingertips from Raynaud's. How can I heal these or what can I put on them?
  15. I am in so much pain with a digital ulcer. Developed about 2.5 months ago. The tissue has died. Can anyone suggest what I can do speed up healing process. Constant burning and painful. I had iloprost infusions but reacted badly to it.
  16. Hello. I have secondary Raynaud's syndrome, cyanosis and I have sores on the hands and feet. I have narrowed blood vessels and circulation problems. I have taken medication; nifedipine, naftidrofuryl, aspirin, diltiazem, sildenafil + losartan. I have losartan now. I have suspected lupus. Thank you for your time. Agnes81.
  17. My hands have been hurting real bad for the last couple of weeks. I was not supposed to see my sclero doctor until October but I sent him an email and let him know what was going on so he set an appointment last Wednesday. He looked at my hands and said he could tell my Raynaud's was getting a lot worse and that my hands were not getting a good blood supply. He prescribed amlodipine besylate for it. I looked it up to see what it did. It is a calcium channel blocker to help the flow of blood my hands have a little color back in them. They were very white and sometimes had a bluish grey color. It is nice to start to see them as pink again. They still hurt but not as bad it is much more tolerable. When my hands do not like to work right anymore they are a little stiff. I am thankful for the spell checker in my computer or you would not be able to read this. I hope everyone had a great 4th of July celebration. For you in other countries, I hope you had a great weekend.
  18. Hi all, really glad to have found this place as you all seem very knowledgeable and helpful My situation is that I've recently had numerous Raynaud's episodes affecting multiple fingers. Prior to that I had less frequent episodes involving just one finger (always the same one). In the last few weeks my hands often look flushed/red and there is a marked blanching effect when I touch them - they turn white when touched and it takes a few seconds for them to return to normal. My hands are still changing, and right now they look mottled reddish with paler areas. My toes are a bit red too. I'm in the UK so I went to my general practitioner yesterday. She ordered some blood tests which will be done next week. She said a referral to a rheumatologist looks likely. I have to agree! The way my hands and feet look I am sure I won't come back with a clean set of blood results. In my mind I have scleroderma, or something very close, and it's worrying me sick. I am 55, but my family are still young and I fear for the future. I have a bit of general health anxiety. At the first sign of trouble I tend to google everything, and the results can be very frightening. That said, I am unlikely to stop researching online as gaining knowledge makes me feel a little more in control. There's lots more I could say but I'll leave it there as it's my first post. Stay well everyone Nick
  19. Hi all, Two years ago I had my first Raynaud's attack, I must say it's been pretty mild so far. Soon after that I was diagnosed with Hashimoto's disease, and lately I have been having numb hands and feet at nights with severe night sweats so I went to see the doctor. My rheumatologist did several tests and the results for kidneys liver etc is fine, also no inflammation. However my previously negative ANA became positive. After this I had a nailfold capillaroscopy which was good, not abnormal result. Since I have been having a lot of symptoms I was wondering if anybody with primary Raynauds has a positive ANA, can this be possible? Or can Hashimoto's cause this? How reliable is capillaroscopy, have you guys had it? Doctor said I have to visit him every 6 months to see if sclero symptoms appear. Thanks!!
  20. Hi all, I'm a 29 year old woman with diagnosed hypothyroidsm (Hashimoto's) I have a few symptoms, although I have seen many doctors they tend to ignore me. My symptoms are: -For 1 year already I have been having night sweats, got a bit better with thyroid medication -Raynaud's (diagnosed) and chilblains in cold -Numb hands and feet at night, or when I cross my legs etc -ANA came always negative but the last one was 'weak positive' with all sub tests (ana panel) negative -ESR and CRP very low I have no fatigue, joint pain, swelling or stiffness. Doctors I've seen told me not to worry about weak positive ANA but I am worried. I was wondering if those could be symptoms of Sclero? How were your test results? Anybody experiencing similar symptoms? Also what is exactly skin thickening, how does the skin look like when it's thickened. I mean the color of it, also I heard something like fingerprints wouldn't be seen anymore etc, can you please give more details? Thanks!!
  21. Hi. Autoimmune diseases run in my family. So after being diagnosed with Raynauds,fibromyalgia, chronic fatigue syndrome, IBS, arthritis, peripheral polyneuropathy, and a host of other disorders, it was not a surprise that my bloodwork came back positive for scleroderma antibodies and inflammation. My oral surgeon, who I am seeing for possible oral lichen planus, also viewed the initial results and asked if I knew I have scleroderma, By the way, I have also started bruising quite easily and am very slow to heal. My general practitioner sent me to a rheumatologist who repeated the bloodwork but also ordered other blood tests I do not understand. I viewed the results. The scleroderma and inflammation results are almost identical to the first time. However, I received a call from the rheumatologist's office saying that the results are negative for scleroderma but show inflammation due to neuropathy. When I asked why these results rate as a negative but the same results from my general practitioner were listed as positive, I was told that false positives are possible and that I would be sent for x-rays. Has anyone else experienced anything like this? Would you please share any insights, if so. Thank you
  22. Hello I am new to this forum and would like some advice on taking Mycophenolate Mofetil. I am a 70 year old non smoker and drinker and have always been fit and active. I was diagnosed with Scleroderma and Raynauds four years ago and have been having regular hospital check ups ever since. Also to complicate things I had a colostomy a few years ago due to a fistula between my bowel and bladder. At my latest hospital visit this past week my consultant suggested that I start taking Mycophenolate Mofetil but I will not be seeing my general practitioner till early in the new year so won't be starting till then. I was therefore wondering if anyone who is on this drug can give me some information on how they are dealing with it as I am a bit nervous of some of the possible side effects. This is due to the scarring of my lung and lung function getting slightly worse.
  23. This is my first post on this forum. I have not been given an official diagnosis yet that I have this illness so I am trying to stay positive and I have seen some very positive stories of people getting with life as close to normal as possible. I have had Raynaud's for a number of years now but recently it has become more severe and has spread to other parts of my body, feet, nose and lips in particular. Even if I am not having a full blown attack, my finger tips remain bluish and cold and I have had my first 'hack' on one of my finger tips due to skin drying out and becoming quite thin and taut. I have taken moisturising my hands a lot more seriously since that happened. I notice other changes in my hands. The skin on my knuckles is usually quite red and ruddy in appearance and I have what I would call sausage fingers and puffy hands. I am being sent to have an oesophago-gastroduodenoscopy ( OGD) in a couple of weeks as I have near constant heart burn and acid reflux. Sometimes I find swallowing quite painful and I have the sensation of food getting stuck in my gullet. The doctor gave me tablets to take to prevent the heart burn and if I forget to take them I suffer for it that day. I notice if I have been exercising - either lifting weights or running - I can experience a horrible burning sensation in my throat. I went to the doctor before holiday because of weekly visual migraines. When a neurologist saw me, he suggested they were probably brought on by stress and tiredness, and while I know there is definitely an element of truth in this, I am curious to know whether there could be a connection between this illness and this type of migraine. The doctor ran a lot of blood tests on me before holiday and I am doing the rounds of the hospital seeing different specialists. Curiously she was not so quick to refer me to rheumatology even though the tests she ran showed positive for various autoimmune anti-bodies. She eventually made a referral for me when I went to see her recently and she saw what my hands are like during an attack. I have been to gynecology due to having very large cysts on my ovaries (not sure if there is a connection?) and haematology. Both consultants have queried whether I have been sent to rheumatology. I saw the haematologist yesterday because of raised platelets. He mentioned that he thought a lot of the symptoms and problems I have been experiencing lately could be connected and he said he was going to write to my general practitioner to strongly recommend that I see a rheumatologist. The bizarre thing is I feel fine at the minute apart from the Raynaud's. I went running a couple of days ago and my fingers felt like they had been slammed in a door. I do have a history of Grave's Disease so it would not be beyond the realms of possibility to develop another autoimmune condition. I'm not entirely sure what the purpose of posting this is! I am looking for information and my search led me to this website. When I eventually get my referral, I'll be telling my consultant how to do their job... Perhaps not the best thing in the world... Thanks for reading.
  24. I was diagnosed with SSc last year, Doctor's think I have had it for the last 20 years (I'm nearly 43) I also have Raynaud's and recently diagnosed with PBC (Primary Biliary Cirrhosis). Get Blood taken every 2 weeks just now because my liver levels are too high, this condition really gets me down because I sometimes feel people don't understand that I am in pain. The SSc effects my hands and feet and I am in constant pain everyday. My Doctor has taken me off my medications for scleroderma just now because of my liver levels. Would love to hear from anyone who has the condition x Karen xx
  25. Amanda Thorpe has produced another video, entitled Raynaud's Rewarming Techniques. The video includes many handy tips for re-warming techniques, and the order in which you should try them. (Also see: Scleroderma Videos, and Amanda Thorpe). Posted 10/07/13. 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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