Scleroderma & Raynaud's UK (SRUK)
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Infusion for Raynauds question!

Hello everyone

Infusion for Raynauds, will they offer it even if you don’t have digital ulcers? I have severe secondary Raynauds, pain is excruciating, takes my breath away. I’m on my second lot of meds which isn’t doing a thing. Could the infusion be an option to me? I live in th UK.

TIA

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Hi I don't have ulcers and have iloprsot infusions to help my raynauds - it helps me a lot :)

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Thank you Rp321.

Can I ask, are you UK based? Never seems to be much info on iloprost infusions? 🤔

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-missymoo I’m also in the UK , I have severe Raynauds with sores etc - no medication at all 😢

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Oh Jazpont 😔 why no medication? X

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I am at the royal free in London, it took a long time to get to the point of trying iloprsot I have tried every single other treatment; nifedipine (all of them like slow release, not slow release etc), sildenafil, losartan, gtn gel, some kind of anti depressant (apparently it can help raynauds), Botox, natural therapies Urm yes basically go down the list of things to do for raynauds and I have done them all I think. I'm always open to new ideas though, will try anything once like if you told me seriously standing on my head for an hour a day would help I would find a way to incorporate it into my day 😂.

I had terrible sores / chill blanes that left me pretty much unable to do anything 'normal' so I went to hospital and was given iloprsot 8 years ago and I have pretty much fallen into the routein of doing it ever since.

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Rp321 😂 me too, will try anything. Today I sat and cried until the pain eased, it’s so awful. People think it’s just ‘cold’ hands, I wish it bloody was 😩😩

Think I need to toughen up with my Rheumatologist. Good luck with your treatments, if you discover anything new, let me know 👍😂

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Oh it's so difficult isn't it - which hospital are you under ? Are you anywhere near london? The royal free is absolutely amazing.

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Nowhere near, a good 2 hour drive. Still won’t rule it out, it’s my health at the end of the day 😉

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Maybe just maybe you could go for a consultation and they could help with a plan for you. It's a long way to go though and not sure how it works if they would let you.

I hope you find some help soon !

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Hi there, sorry to hear you are suffering...this hideous weather is making life very challenging for us all at the moment. The answer to your question is maybe. I know that is not what you want to here but some areas of the UK seem to offer it more readily than others. It will be down to your Rheumatology Consultant to make the decision. If they look at your symptoms and judge them of sufficient severity to warrant iloprost, and that is their drug of choice, then you will get it. As far as I know GPs are unable to prescribe Iloprost infusions.

What meds do you take? Do you take Sildenifil (Viagra) that seems to be the preferred option these days for severe Raynauds and there are many people on here who have had good success on it.

Lucy xxx

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Hi Lucy, thanks for responding again 😃 you’re always so informative.

I’ve tried nipifidene, but made me poorly and now taking 50mg losartan, but just not helping. I’ll be seeing my Rheumatologist in June and have also been referred for hand therapy? Too. I did wonder about infusions and guessed it wouldn’t be easily available. It’s definitely a conversation I’m going to have. She mentioned referring me to a clinic about the systemic sclerosis too, maybe I need to do this?!

Thanks again Lucy x

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Hmmm, an appointment to review your Raynauds in June, how useful :) Do you have access to the Rheumatology team in between appointments to feed back to them that you are not finding the Losartan helpful, and to ask if there is anything else you can try (like Sildenafil)? For example, do they have nurse practitioners with an Advice Line that you can use?

I think if you have the option to go into a special clinic for Scleroderma then I would take it. do you know how quick this hand therapy will come through? It probably won't help the Raynauds per se but they might have useful advice/treatment and if they see you have a real issue with your circulation then maybe they could feed that back to your consultant?

Lxxx

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Hi Lucy, yes I do have a helpline number, I almost feel I don’t want to waste their time, although I know I’m not. My therapy app is in a few weeks so hopefully they’ll refer back to my consultant. I think I will get referred to a specialist clinic.

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No, of course you are not wasting their time. It is a waste of your time taking medication that doesn't work for you, and I am sure they would want to know so they could try something more effective. You know what you would tell someone else...so give them a call. :) Good to know you have a therapy apt for your hands soon though! Lx

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Thanks Lucy, you’re right ☺️

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I don’t have ulcers and they have tried me on 3 rounds of Iloprost , sadly it didn’t help - each year I hoped it would all of a sudden help but no. I’ve tried all the Normal meds , acupuncture , herbal remedies etc . My rheumatologist put me on a 6 month trial of viagra - Sildenafil . I don’t think it works but then I notice when I don’t take it if that makes sense. I’ve had to push for both options , it’s taken many years.

I got a pair of genuine Ugg gloves - they work wonders I don’t need to put handwarmers in with them. Cost me about £80 but I couldn’t be without them now !

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Interesting. My previous rheumy would laugh, and belittling raynauds. To him, Raynaud's isn't a real condition worth his time. Viagra can be risky, if you have weakened micro vessels somewhere, I stopped it immediately.

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Have no ulcers, thankfully, but severe raynauds - my next infusion is this Thursday - 3 days as an inpatient for iloprost - I've had infusions in the past I don't think they've helped but my rheumatologist ( who's lovely) feels I really need it now- nifedpine made me feel ill and non of the recommended herbal remedies have helped. I'm also due to start losartan

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Thank you for sharing. Good luck with your treatment. X

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Like you I also have severe Raynaud’s as well as Systemic Sclerosis and have had digital ulcers in the past. I have Illoprost transfusions and they do help a little but I go every 5 weeks for a 5 day course as a day patient and I tend to go from September through to March/April. However, my Consultant has recommended starting Sildenafil alongside starting at 25mg daily to see if I can tolerate it then gradually to increase until I am on 75mg daily. She reckons this will help and hopefully reduce the amount of times I have to go for the Illoprost. Hope this helps x

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Hi missymoo I have diffuse Ssc with severe raynauds (diagnosed 2005) and like you have experienced agonising pain both during and after bad attacks, and yes it does reduce you to tears when it’s extreme, it really is unbelievably painful, and I find also that after following a long and severe attack my hands feel almost burnt afterwards so it clearly causes damage. I am in the care of the Royal Free in London and have been since diagnosis, although like you I live a good two hours away. I have been having iloprost infusions between one and three times a year for the last five years or so and it makes an enormous difference. Most winters I have had horrible ulcers which take months to heal, in spite of taking every possible precaution to avoid them, but finally this year I am ulcer free! Still have the raynauds attacks but not as severe, and easier to recover them quickly. Many many people who are in the care of the Royal Free come from all over the country - Lincolnshire, Berkshire and further afield, so it’s worth trying to get a referral if you possibly can, and if it’s possible for you to travel there. Prof Denton and his team are truly brilliant, and the trials team are constantly looking for people to help, both in the hospital and remotely if you can’t get there often.

Good luck and I really hope you get some relief

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They should offer you infusions for severe Raynauds with or without ulcers! You can still opt out and make your decision based on what options are on offer. Iloprost as much as most of the other meds that we come across regularly in this community all do essentially the same thig: to open our blood vessels. But because each of this medications does that in a different way and approach; and because each of our bodies will react slightly different to various ingredients; that is why we try our way around in order to find whatever works best for our individual body.

I had my first ever Iloprost infusion the first week of this year. It was hard to really see the benefit at first due to some side effects. First the nausea and headaches during the infusions (although I did do fairly well with how I reacted to it), but then also pain in my right knee with loss of mobility for a couple of weeks. Didn't like that at all and was questioning the benefits vs the bad stuff it brings me and if it's worth it...

By now I can definitely see the benefits, especially during this torturing spell of Siberian weather, topped off by our heating being currently broken (great timing!). My fingers are sensitive both by touch (it does hurt a bit when I knock my fingertip(s) into something by mistake) and by their sensitivity to cold (I wear a standard of two pairs of gloves on top of each other: a pair of silvergloves within a pair of big and clumsy sheepskin mittens)... but general observations pint more into the direction of a manageable case of primary Raynauds (white fingers, numbness), rather than the hell of the beast of bue fingers, digital ulcers, nerve pains and loss of tissue and had experienced previously.

The cold spell back in November was definitely the greater challenge for me, although it certainly is more bitter this time round! I dare not to imagine in what dire situation I would find myself right now without the Iloprost! 🤔

Would I do it again next winter in spite of the side effects?

It certainy seems more and more likely... 😊

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I don't go to the Royal Free but Prof Denton and his team Visit my local Hospital , Its a Joke I have had my Rheumatology appointment cancelled 4 times since seeing the Prof 2 years ago I was meant to go back January this Year for appointment but its now been changed again to October . Luckily the Medication ( Amlodopine ) is working now and I do get some relief I was advised by Professor Dentons Team to ring the hospital at any point I feel I am not coping and they will bring me in for another Illoprost Infusion

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