Remission/ sores : I was told by my... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Remission/ sores

Emfrenette profile image

I was told by my rheumy I was in remission? Can anyone explain this to me ? I have been diagnosed with secondary reynauds and they found it was from Crest syndrome . Or so they first thought it was Lupus... I live in canada and things arent as advanced as everyone from the UK wich is very stressful I keep thinking I'm not properly cared for .. my fingers are always cold and in pain numbness at work it's making it difficult to do anything. I dress warm then I sweat my butt off . I cant wear gloves because everything at work is hands on and makes it difficult to grasp things. My family doctor had me on nefedipine a few months back and took me off due to my migraines getting worst . Then she made the decision without confirming with my rheumy to put me on propanolo wich is a beta blocker and started making my legs not function properly due to lack of oxygen . He was very upset she put me on a beta blocker and not a calcium channel blocker . Since this makes reynauds worst and more symptoms were being added .then he took me off all meds completely in August and now it's cold out I have to wait to see him before December. Why the long wait ? I'm suffering ! The weather is killing me I cannot talk directly to my rheumy they just answer my call at the front desk and tell me to wait for them to call me for my appointment booking . But how long ? What can I do until then ? I started having a bit crack under my middle fingernail and is so sensitive to any touch i wrapped it and had it covered in polysporin. Then skin got dry started peeling again and now its raw again and hurting again and again . What sort of relief have any of you tried ?

3 Replies

I have found that pain comes with infection.

I have had an ulcer all summer that just wouldn't heal. It has been close to healing many times but keeps opening again. The other day I found a bottle of iodine and put a drop on it. At the moment I am semi hopeful I have got the better of it.

I know you have said it difficult for you but try to keep your hands as warm as you can.

I use pure lanolin which you can find in the baby section. It's actually used for breast feeding mothers and it works really well for healing not just coating the skin.

I can make an educated guess on the remission comment. So my rheumy told me that with my diagnosis (diffuse cutaneous scleroderma formerly known as CREST) that essentially after 4/5 years my condition kind of equals itself out and a lot of the acute issues ( in my case kidney failure, pneumonia etc) will stop just appearing out of nowhere.

So I'm still living with scleroderma but I'm more likely to be stable in the condition I'm in so need less monitoring. Like how with cancer patients in remission their symptoms stop but they still need checks etc.

As far as ulcers go my GP gave me hydrocortisone cream and that really helped. Best advice I have is try not to pick them or touch them, just let them scab and get hard.

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