Raynauds out of options: Hi gang... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Raynauds out of options


Hi gang,

Running out of options for my raynauds. Ulcers not healing. All vasodilator meds open the veins in my head and cause migraines - even gtn patch.

Consultant has suggested a cervical sympathectomy - finding it hard to get info on it anywhere. I have scleroderma lupus and raynauds so mixed connective tissue disease diagnosis.

Any experiences of this surgery or where to find info gratefully received


7 Replies

Hello, I didn't think think they did cervical symp. any more as it wasn't effective. Where are you being seen, is it at a Scleroderma specialist centre? Have you tried sildenafil, it helps me.

butterfly1000 in reply to Duttie

I've tried many vasodilating meds but because they also open the veins in my head I end up with migraines.

I see a rheumatologist - been with her 14yrs and trust her a lot. My specialist did say that she would need to look into it too so we both agreed to go and read up. I'm finding it hard to find good info though.

Thanks for the info on them stopping - do you know where I could read more about its efficacy?

Thanks for taking the time to reply x

Duttie in reply to butterfly1000

Sorry I don't have any info, other than trying to look it up on the internet, I just had a feeling that it was something done many years ago, but not done now.

I have many on my finger and they usually take 7 months to get them to stop bleeding ,pain in the ass yes 20 minutes of bleeding just keep them rapped and try not to use the finger much

Have you had Botox injected into your fingers yet ? That's the 'new' thing at the moment that's helping lots of patients.

butterfly1000 in reply to Rp321

Ooh no not heard of this ... will see what I can find on that. Thanks for the info

Have you tried Bosentan?

That would be the next indicated option if you live in England see page 10 of the NHS rationing guideline here : engage.england.nhs.uk/consu...

There is a good review of treatment options including surgery here medscape.com/viewarticle/75...

Info on Botox here mdedge.com/rheumatologynews...

Good luck and I hope the info is useful.


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