Scleroderma & Raynaud's UK (SRUK)
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Any advice on worsening Raynauds?

I have suffered from Raynauds for the past 30 years. i started treatment when i was 14 that included electric shocks through my nerves and nifedepine, wearing 2 pairs of gloves when out and 1 pair inside (was great when i was a cashier in a bank with gloves). When all avenues closed as my hands were spasming and clawing, i had a sympthectomy in 1993. Since then i self managed my condition with heat pads, gloves and holding warm cups LOL. The past 18 months my raynauds has come back with clout, back to colour changing hands, back to being cold on the inside and shivering, I'm back on nifedepine, been put on fluoxetine but cant seem to get things controlled. Any ideas???

3 Replies

Have you spoken to your consultant about illoprost ? Its quite an intense treatment, & NICE have recently changed their guidelines on who is able to have treatment.

But your raynauds does sound quite server.

It's worth speaking to your consultant, I still get attacks with illoprost but they don't last as long once I can get my body temp back up, previously once an attack kicked in I'd be in pain for the rest of the day.

All the best


Thanks - not seeing them till October but at GP tomorrow - will push for something else


Nifedipin and Viagra works for me - trying to put the ilprost infusion off for as long as possible


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