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  1. I have had blue fingers before and freezing white tips. Today or no rhyme or reason the temperatures weren’t cold my finger turned white and then blue And 5.5 hrs later it’s still blue. I’ve never had that to happen and I do not know what to do.
  2. 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.
  3. Hi, I'm looking for a Rheumatologist in Phoenix/Mesa area who specializes or is knowledgeable in SSC.
  4. 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!
  5. 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.
  6. 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. 
  7. 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.
  8. 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.
  9. 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.
  10. 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 thick
  11. 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 bu
  12. 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.
  13. 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.
  14. 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 ho
  15. I have ulcers on fingertips from Raynaud's. How can I heal these or what can I put on them?
  16. 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.
  17. 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.
  18. 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 col
  19. 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.
  20. 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 Raynaud
  21. 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
  22. 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 bloodw
  23. 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 s
  24. 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
  25. 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
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