Scleroderma & Raynaud's UK (SRUK)
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Surgery for severe Raynaud's

I have seen my Rheumatologist this morning to discuss how the Illoprost Infusion I had at the end of last year has helped me. I feel it did help me in some ways but I didn't get much from the infusion as I found it to hard to tolerate.

She said I could have it again if I wanted it, but we have agreed to leave it a little while, maybe over the summer.

She also suggested I could have surgery on my fingers, probably the worst finger first to see how it helps. I am very interested in that. Has anyone else here had surgery for Raynaud's?

I asked about painkillers as the ones I am taking are not helping like they used to and she suggested Patches for pain relief, has any one here tried these?.

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Hello Seaside, Personally I would ask for another Iloprost session, I had a 5 day infusion last November and a 3 day infusion last week, it as always taken about a week for me to see a benefit, but it helps alot. Can I ask how many mls per hour do you start on, at the start of the day? then what do you go upto after the first or second hour? Bearing in mind they monitor you every half hour, I tend to go 1 and a half hours on 10 mls, then upto 20mls an hour for the next 2 hours, then upto 30mls for the remaining time, equalling 6 hrs in all. Second day exactly the same, and then 3rd day I start the 30mls after 2 and half hours until the end of the 6hr treatment. I always end up taking 2 paracetamol after 2 to 3 hrs of treatment. If I have 5 days treatment I tolerate it better and after 4 and half hours I try 40mls an hour. I hope this all makes sense, sending you hugs. Smile and wave, smile and wave, xx

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I had 3 days infusion in December last year. I am not sure we are talking the same kind of measurement because I started at 1.2 moving up hourly by 1.2 up to 3 on day 1. On day 2, I started at 1.2 and moved up quickly to 3.6 but had to ask them to stop it for an hour and then went back on it at 2.5. On Day 3 I started at 1.2 then up to 2.8 and back down again to 2 for the last four hours. I had to have Paracetamol each day and anti sickness drug. I did not tolerate it well but it gig have some effect for a short time.

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Hi, they mix 5mls of Iloprost with 250mls of "water", each day and infuse it over 6 hrs, as yet I have never got through the whole bottle.

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They mixed mine with 50ml of water which is why your figures are higher than mine. So 10ml for you was 2ml for me. You went up 30ml which would be 6. which they told me was the maximum they could give. They wanted to get me up to 4.8 but I couldn't tolerate it.

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Hello, I was offered surgery on my fingers by a hand surgeon, severing the nerves in my palms. I thought this approach was extreme and said no way. Quietly I was horrified. Would rather take full time measures to keep my hands warm.

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I was told they cut the nerve at the base of the finger. This finger is so painful and is always the first one to be affected and the last one to recover from an attack.

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I believe some centres are using Botox to achieve the same thing but on a temporary basis. Is there a possibility that you could access this?

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I would go for another session of iloprost - I've had two rounds in the space of a few months when it was at its worst. What medications are you on at the moment for your raynauds?

I was offered surgery, but refused it. I'm glad I didn't have it.

I'm offered iloprost every 6 months. I hate having it because of the side effects, but it's one of those things you have to do when raynauds is so bad. I feel so much better afterwards.

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I have a question for you all. What EXACTLY is happening to your hands to allow for such drastic measures?? I’ve had Raynauds progressively get worse for 15 yrs. I see it changing. Are you getting ulcers or what is going on?

Before these steps - have or will you try Traditional Chinese Medicine (TCM) ??

Just curious.

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Have you tried TCM and what was the result?

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I have but only 3 times. That’s not enough. I can say that in those 3 visits she has improved my intestinal problems VERY much. By 80%. That is huge.

I’m in the middle of making a decision to continue with her for 8 more visits. It is expensive. Once I Do though - I plan on making a report. What I can say is I trust her and with all the studies on TCM coming up that show a good measure of success in so many areas- I think we should all give it a try. It won’t cure anything. But don’t we all wish for any small improvement!

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I have been told that surgery would only be considered as the very last resort. Not only because the healing ability of our fingers isn't really what it should be due to the lack of blood circulation.

Messing around with blood vessels or nerves doesn't exactly strike me as a comforting thought. If I learned one thing from the severe form of Raynauds... it's that a bothered nerve is not very forgiving and will take a long time to calm down. This might be something to consider? Maybe check with your specialist who offers you the op.

Make sure you get enough information before making an informed decision on this. I somehow doubt that the result will be a completely healthy finger that behaves as if nothing bad ever happened to it.

Sorry if I'm sounding all too pessimistic. I'm just trying to be realistic and wouldn't put my hopes too high for fear of disappointment. Anything that will be better is a greatly appreciated bonus!

Good luck! :)

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I was offered surgery on my palms some years back for my sever Raynaud's, but on hearing that 60% of the surgery doesn't work, then on the 40% that does work, it only works for up to 2 years (due to the nerves re-atteatching / growing back) I couldn't believe surgery was offered as an option.

Obviously I refused it point blank!

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