Hi everyone I am

New to this but have reynauds and schleroderma

Ok so I have reynauds and schleroderma and I've only begun to suffer from ulcers/infections the past 6 years. I have had: iloprost, Viagra, nifedipine, asprin, lorsatan, gtn patches...

I only get put onto medication if I randomly get a toe or finger that turns blue and within a few months causes extreme pain and turns into a nasty infection where iloprost and antibiotics are required. Any one else suffer like this?

15 Replies

  • Hi and welcome :)

    I get swelling and thickening skin and bad dry skin so far. I'm on hydroxychloroquine and soon mycophenolate. I'm surprised they're not managing the underlying autoimmune response and have approached your care in a just "putting out fires" sort of way - where are you based?

  • Hi thank you. Took me a while to realise I had responses. I didn't realise there are ways to prevent infection in toes and fingers. I've always had an infection in toe/finger and THEN I'd be treated for it for about 3 weeks+

  • I'm in uk and under the care of royal free

    I explain my hands and joints are getting worse and they just brush me off

  • Hi bear... I've been prescribed with hydro...... Whatever its call but haven't started it yet as I need to do the eye test. Currently on iloprost doing the quick fix

  • I don't understand how you are being medicated. There is no prevention in that plan whereas my treatment is nearly all to prevent problems.

  • Do you think its because I recently had a baby and would like more children in the future.. Or am I just not cared for properly?

  • You may be right about the baby. I would make sure of that.

  • They kept saying "your condition is stable" which is great and I don't need medication apart from

    Asprin but my concern is how easily the toes/fingers get infected.. Its so random

  • Yah, it is the pain. Even when there is healing ... IIn Toronto, I have just finished 2 months of Hyperbaric treatment to heal heel and toe ulcers.... helped some but OH the pain continues. What do you find helps> I am on morphine and sometimes marijuana

  • I can handle the pain at the mo, but it's annoying as every may/June I have the same problem

  • Hi XT_bubbles I have Raynaud's and Scleroderma with lung involvement and all of my treatment is preventative methods especially when it comes to my Raynaud's so I don't understand the your treatment plan.

  • I've had echo, ECG and lung functions tests which show all is good but it's the infections in toe/finger which is annoying- every year around the same time of year-when the weather gets better, I don't get it

  • I have recently had problems with my toes blistering and swelling. Need to go see doc again....

  • I have recently had problems with my toes blistering and swelling. Need to go see doc again....

  • I would definitely speak to someone about controlling your immune response which is causing your symptoms rather than treatments to try to rectify them. Talk to your doctor, or if possible, get a referral to a new one.

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