Which hospitals carry out Digital Botox Treatments?

[Slinky72]

Hi all, during a recent consultation with my vascular consultation, he advised because my Raynaud's is so severe all year round, I can't keep putting myself through the IV Illoprost infusions. The week of infusions make me increasingly poorly as the week goes on, plus I also have Chronic Fatigue which is impacted, so it leaves me very unwell & unable to work for 2/3 weeks after so need to look at other more specialist treatment, the first being Digital Botox.

He has written to some colleagues to see if he can identify anywhere that is carrying this out in the UK as he is keen for me to try it and not something he has experience with. Has anyone else had Botox for Raynaud's or know where it is carried out so I can pass this information onto him. I have seen many people on here refer to the Royal Free as being a specialist hospital and wondered if they might carry out this treatment.

He also says we can look into a sympathectomy but apparently this has side affects and I'd have to go to London for it (I live in Dorset) but as I live alone & without any family, I'm not sure how feasible this would be.

Any advice would be appreciated. He has started me on Sildenafil in the meantime to see if it does help, although on a previous occasion I was on 6 a day with no impact, and have suffered in excess of 8 attacks today despite not having even left the house and having a heated pad under my feet all day & even added a throw over my legs! Where is summer, it does at least reduce my attacks to a slightly more manageable level!!!

[caledoniancat]

It was Drs in the Royal Free who conducted research into this (think in 2018 and reported online). If you contact that hospital (DrDhaliwal) they may be able to advise you if there are Drs nearer to home who can carry out the Botox treatments. The 2018 publication did say more randomised controlled trials were needed to determine if it really was effective. I haven't checked to see if more research was carried out but I assume it was although possibly interrupted by pandemic. If research is still in progress, they may also be looking for more participants. Good luck

[Slinky72 in reply to caledoniancat]

Thank you for your reply, I'll pass this onto my consultant 🙂

[Skrubbah]

I was offered Botox in my fingers at Hinchingbrooke Hospital, Huntingdon. Side effects could be loss of muscle strength though so I declined for now.

[Slinky72 in reply to Skrubbah]

Thank you for your reply. Is that a temporary loss just following the treatment or permanent? I'll let my consultant know you were offered it there.

[Skrubbah57 in reply to Slinky72]

Cant say for certain. I suppose it is like if you have Botox anywhere else, it wears off over time.

[MaryC13]

hello! I suffer with my Raynaud terribly! I haven’t had the digital Botox treatment as yet but my consultant has recommended it….they do it at the Royal Free Hospital in London. I also take sildenafil the highest dose 3 times a day and 50mg of losartan. Also sheep skin mittens have been a god send for me particularly through the winter but in also the same any temperatures lower than like 25 degrees my hands are blue/black and numb. We just spent 2 weeks in Cyprus and I had 0 issues….where is our summer?! Sending well wishes x

[Slinky72]

Hi Mary, thank you for your reply. I'm sorry to hear you suffer as badly as me, it's miserable isn't it! Losartan gave me side effects & I am trying the Sildenafil again although previously 6 a day made no difference hence why I was offered the Illoprost. I have cashmere finger less gloves and wristwarmers I wear most of the time, even inside when working at home & I have sheepskin mittens & Uggs for the winter and never without multiple layers. I'm finding this 'summer' particularly difficult as the slightest temperature change such as going into a different room or any breeze will give me an attack. 4 layers, a heated footpad and a throw whilst working at home at the mo! I'm glad your sunshine break gave you a fortnight's respite. Think I need to emigrate somewhere warm & sunny!!! x