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anotherday

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About anotherday

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    Brasil

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  1. Hi, Jean! I have had CREST scleroderma since I was 25 years old, sometimes Raynaud drives me crazy, I have had 5 ulcers since last year, even living in a warm city. Be calm, this surgery is simple and you will be great. :) Welcome to the forums, I feel so good since I joined here and met so many nice people here who can understand what we feel. Judyt, what are you using for Raynaud? Amanda, what should I do to see a scleroderma expert in UK? i live in north of Brasil and here we don't have any scleroderma experts. Hugs to all. Ro
  2. Hi, Sacha! I have very visible veins too, especially in my legs, but they don't look like cutis marmorata. I have a white skin but not so much. I have crest scleroderma and antiphospholipid syndrome, and I'm treating with methotrexate, sildenafil and phenprocoumon (anti coagulant). I'm going to ask about this to my rhematologist, going to see her next week. Hugs Ro
  3. Hi, everybody! For me Raynaud's gets worse with cold and emotional stress. Well, I think I'm dealing better with that by always having gloves and a coat in my bag, even living in an extremely warm city. I thnik my circulation in the hands woorsened, my fingers are thicker, when I close my hands circulation interrupts. Love to meet you, Susie! I surely will join the chat every time I can. Hugs Ro
  4. Hi, Nickyhj! I used Methotrexate for 3 years and don't remember of any side effects. :) It was Methotrexate 20 mg once a week (on Mondays) and 5 mg of folic acid in the next day. I have CREST scleroderma, diagnosed when I was 25 years old (now I'm 30), I was very well with Methotrexate till I had a big emotional stress a lot last year and had various digital ulcers; then my rheumatologist changed it for Azathioprine (Imuran); I got better but didn't note such a incredible difference in the results of these two medications. Now I'm having articular pain, and she said I'm gonna back to Methotrexate because it's better to joints. I joined the forum recently and I'm loving it! Welcome! Hugs Ro
  5. Hey, Judyt, Thanks for your reply! Living in a city whose weather is so warm all the year is uncomfortable because I sweat a lot when I get out of home and when I get into work I feel so cold! People at my work think is very strange somebody using jackets and gloves in my city, and sometimes its very boring to explain why and see them looking me like they're feeling sorry for me. Yes, we have health problems, but we can be happy and have a relatively normal life. Hugs, Ro
  6. Hi, everybody, I live in a very warm and humid city, at least 30º C all the year. Last week I travelled to a colder city, it was autumn there (in my city we don't really have seasons) and it was about 20 to 30º C; I felt great! There people don't use air conditioners and the temperature is constant inside and outside places. I don't feel weird wearing more clothes in cold weather. Raynauds and digital ulcers are very painful and since they came into my life, I had discarded my plans to move to a colder city, but now I'm wondering what is the best thing to do. Please, tell me your experiences with Raynauds and the weather. Hugs to all. Ro
  7. Joelf, "singing for breathing" sounds really good! :) By the way, it is good to find something we like to do. Singing is very good to maintain the lung function. Keep singing! I would like a lot to be a good singer :) Sooty30, in some cases, we need a more directioned treatment because we should go slowly in exercising our lungs and the treatment must be regular and progressive. Hugs to all Ro
  8. Hi Sooty30, It's hard to find good health professionals, at least here in Brasil, I had pass a year with a wrong diagnostic... and wrong treatment. Now that I've found a good rheumatologist, I give preference to go with some specialist that she has indicated. Maybe your husband is picking out the positive bits to convince you to not get too much worry; I've done this sometimes when I saw that my husband was suffering. Is he doing physiotherapy as part of the treatment? I'm physiotherapist and can tell that (concomitant with the medication) respiratory physiotherapy it's really important to mantain the function of his lungs and to improve his breath and tiredness. (Sorry, my English is not so good). Hugs Ro
  9. Hi, Thank you all for the responses, is good to know what are your experiences, this forum is helping me a lot. Joelf, thanks for the link you have included, it's really interesting! Hugs Ro
  10. Hi, everybody! Your replies made me so glad! Sometimes it's hard to have a rare disease, most of people don't understand; my husband is the only person who really knows what I'm passing through, but sometimes I don't like to talk so much of what I'm feeling because I know he suffers too. Here I feel so comfortable, I love to read all your stories. Thank you all! Hugs Ro
  11. Hi, My Raynaud's has become really worse since the last year, even living in a hot city. I passed through a big emotional stress and had 8 ulcers. I am treating Raynaud's with Viagra, 20 mg 3 times a day, it works well for me, I don't have side effects but there was a time that even Viagra didn't work. I am also taking azathioprine and phenprocoumon (marcoumar), because it was discovered that I also have antiphospholipid syndrome. Hugs to you all.
  12. Hi! Well, I'm new in this forum and I'm very happy to find you all. I am 30 years old and have had Crest scleroderma since I was 24. My finger tips always split, and I had digital ulcers for a year. I have perceived that splitting diminishes if I don't use detergents (I have to use procedure gloves without powder to work) and take care to not let my skin get thick and I always hydrate. As I live in a hot city in Brasil, people think I'm strange because I have to protect myself from cold when its not cold... Now that I found this forum, I don't feel alone anymore. Hugs Ro
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