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Everything posted by RKing

  1. 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.
  2. I seen the wound treatment center yesterday for my ankle and they looked at my digital ulcers. They said they are healing nicely and there is no sign of infection. They said I could continue the OTC meds and vitamins as long as there is no negative results. He said if I had just came into him not taking anything he would suggest painting ulcers with betadine and removing an dead or peeling skin. So I took his advice and reduced all the stuff I was doing and now I paint the ulcers with Betadine. I assume it is different for each patient as none of us are the same, so do as I did and follow Jo's advice and follow up with a wound specialist. Though only a short time I actually feel a difference.
  3. It seems to me that a great amount of information must be gathered. There unfortunately is no single blood test or something similar that says you do or do not have Scleroderma. Blood test along with physical test, pulmonary, arterial etc. But a vast amount of information is gathered then a most possible accurate decision is made. As a very recent person diagnosed with Scleroderma with Raynaud's I do have some sort of knowledge of at least a small portion of what you might be going through. The anxiety I am sure is through the roof and 90% of your thoughts are based around the knowledge you have now. Stress can cause your symptoms to worsen or even new symptoms to occur. I know there is nothing I can say that may ease your thought but know you do not have a full diagnostic performed yet. To worry about what may be is something I had difficulty over. I had to learn to relax and know even if I do have this I will not let it define me. You are more than the sum of a possible disease. I have learned my life will continue, yes with some changes but not all for the bad. Try to keep calm if possible, speak with your family members or very close friends allow their empathy to help you. But until you have gone through all the test and officially diagnosed the anxiety and undue pressure you are putting on yourself could result in negative consequences. I am sorry I cannot offer better words but I hope the best for you.
  4. I broke my ankle end of last year and had to have a plate put in. I got a nasty staph infection that required me to go to the wound treatment facility. I have a hole in my ankle about 6mm long, 5mm wide, and 8mm deep so I will be going to them a very long time as they keep digging and causing scar tissue to build up. I spoke with them on the phone and they said they would be willing to look at my ulcers on Monday then Wednesday I see one of my Rheumatologist and I can give the doctor the thoughts of how to go about treatment. I would like to think the peeling is a good thing. My ulcers are in the middle of a very hard and thick skin and this is what is coming off. I have to trim it as they catch on everything including my gloves. Thank you for the links!
  5. Since I have had the Raynaud's on 4 digit tips my left index finger was really bad. I have been using a variable great amount of everything I could find. Vitamin E gel, silver sulfadiazine, aloe vera, 10mg of Amlodipine, 2 days of Sildenafil 20 mg 1 pill 3 times a day out of pocket. and a non allergenic, no odor moisturizer. I tried measuring the ulcers using a caliper but the pain was more so I gave up on that. What I want to know is what do they look like when they begin to heal? The skin around the ulcer has disconnected or started peeling toward the ulcer and I am wanting to know if this is a good sign.
  6. 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
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