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catherinechaos

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About catherinechaos

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  1. Thanks for looking anyway and thanks for the reply
  2. Hi Has anyone had the opportunity to take iloprost in a tablet form? I know it's available but expensive.
  3. Thanks for the reply. At least I know what to research now. x
  4. Hi everyone I wonder if anyone could help me by putting a name to a symptom? I have diffuse scleroderma with raynauds and digital ulcers for ages but my index and middle fingers from the top to the first knuckle have shortened considerably and from an x ray I saw the bone has just disappeared. Just below the nail has swollen and is hard and red and shiny. What is this called? Not just stumpy fat fingers I hope! Cathy x
  5. Thanks Lizzie I think my fingers must be very similar to yours. I suppose the iloprost is worth a try. Thanks
  6. Thanks for having a go! The doctor didn't really specify. They always recommend Iloprost and I try and avoid it if I can but I thought I would try to be well prepared for my next appointment. If it would help my fingers I would have it. I still wonder if it isn't finger clubbing but as you say there are more questions than answers. This is the weirdest illness I have ever come accross. I don't know whether Im coming or going and the doctors seem to know the least. Thanks for replying
  7. Hi everyone! I've searched previous messages but I'm coming up with a blank, I hope someone can point me in the right direction. My index finger started to shrink about two years ago and is now pretty bulbous and ugly with a finger nail that grows at an odd angle. It's very tender and the skin is damaged. I told my sclero doctor and he said I was losing finger pulp, but now its happening to the index finger on my other hand and also my middle finger. I have some questions: Is there a possiblility that this will eventually happen to all my fingers? Will Iloprost help or prevent it happening? I hate having Iloprost but if it would help then I would do it. I only saw the doctor yesterday but you know how it is when you come away - you've forgotten to ask all the important stuff! Thanks very much! cathy
  8. Yes it was stress for me too - I was 22 and had just left home for the first time, had moved to London and was struggling with homesickness. That's when the first symptoms appeared. I think stress has a huge effect on the appearance of symptoms but who can go through life without any stress?!
  9. Thank you so much for all your replies. KarenL, I really appreciate all the things you said and I will take much more care now. I was diagnosed at 22 but the consultant at the time didn't tell me what it was so I just lived with it and was probably too blase. Then when I was 32ish I got my first ulcer and looked it up on the internet and then when I went to my (different) doctor and said I thought I may have scleroderma he looked back in my notes and said 'Well you've had that all along' So that is probably why I don't take as much care as I should, because I had Raynauds for all that time without any consequence. Now I can feel things are changing though so I will do all the things you've said. And take loads more care. Thanks for clarifying it and I will see the specialist and ask him about the meds you've recommended. Thanks again for all your advice, I appreciate the time you've taken to help. Cathy
  10. Thanks for the links, I'll give them a good look but I am sat in an office with the heater directly on me all day and my hands are dark blue. I couldn't be any warmer and I wondered if anyone would share their personal experiences of how long they had ulcers for before they got gangrene etc. How do we live our everyday lives sensibly with these symptoms? Is it really necessary to have the ulcers dressed ect. I'd really appreciate all your answers. I have to go home from work now but I will be back on line in the morning so I may disappear for a while. Thanks
  11. I'd really appreciate your opinions on this one - I've had systemic scleroderma for 12 years now but it seems to be progressing very slowly. I have some lung involvement but no shortness of breath. I feel sick a lot and tired and I get ulcers regularly and the finger pulp has gone from a few of my fingers. But I have Raynaud's attacks all the time, even in the warm. My question finally is this - how careful do I need to be? If I allow myself to get cold does that increase ulcers? What chance if I get loads of ulcers is there that I may increase the chances of getting gangrene. I don't want to be a drama queen because I realise there are people a lot worse off than I am but I also don't want to be naive about what I may have to face in the future? Any comments?
  12. Oh my goodness - a hernia?! Can we just ignore it and carry on regardless? There's no pain with it. I don't want a hernia thank you very much. I prefer the stick your head in the sand option at all times.
  13. My cramp is exactly the same, if I lean back really far I can feel it pop back in! Please let us know when you've been to the doctor if it's related, my doctor usually just looks at me down his glasses when I ask about symptoms and says 'possibly'. I think now that anything and everything can be related to it.
  14. I get this too! I didn't know it was connected to scleroderma. Does anyone else get a cramp in their stomach when they bend over - is that also connected?
  15. Thanks for your replies - you're very welcoming. I've got an appointment with a dermatologist this afternoon but I still thought it was an allergy or something I was doing that was making it this way. It sounds like what you had peanut - was yours connected to the sclero or just one of those things?
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