Scleroderma & Raynaud's UK (SRUK)
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ILOPROST

I am due to start Iloprost Treatment in 2 weeks time. I suffer from severe Primary Raynaud's. I have tried several medications, from calcium channel blockers to experimental drugs like Valium.

I am really nervous about Iloprost treatmemt and I do not know much about it. Can anyone give me any advice on what to take with me or any information to help settle me nerves?

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Hi BertieB_280616

I had my first Iloprost treatment in November for 3 days. I was extremely nervous as it was all new to me but the nurses will only give you how much you can tolerate, they start you on a low dose and gradually increase it. You may feel a few side affects like aching, headaches and nausea which I did experience but make sure you tell the nurses if you do experience this and they will lower the dose and give you anti sickness drugs to help. To be honest it’s not the most pleasant experience but it is worth it, it helped my Raynauds loads in both my hands and feet and I felt the affects lasted for about three months, sometimes longer with other people! I’d say definitely wear comfortable clothes and maybe bring something to read to help keep you occupied. There was a lady next to me who was having the Iloprost treatment too who had previously had it many times and I feel that chatting to her really helped.

Good luck and I hope all goes well for you! Dani X

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Hi Dani

Did you have iloprost as an in patient or out patient?

Kim

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Hi Kimbalina

I had it as an outpatient, 6 hours a day for 3 days and I was allowed home each afternoon after the treatment was finished. I made sure I got there really early so it meant going home early 😊. I hope all is good with you X

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Hi there, I've had Iloprost infusion 4 times over last 3 years. I was an outpatient so arrived about 9am and left about 3 pm as its a 6 hour infusion X 5 days I have only ever suffered mild headaches which went went infusion was turned down. It help so much with ulcers on my fingers that were unbearable. I went for my iloprost last October but have to say it didn't seem to work as well. My specialist has put me on sidnerfell tablets (3 Dailey ) to open up blood vessels. This also gives mild headaches and makes you go a bit pink ha!!! but seems to be helping. Good luck with your infusion and I hope it helps you 👍😀

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I tried Sildenafil but I suffered with severe side effects. I was unable to eat or drink on them. I have heard that Sildenafil when accepted by the body has been quite successful.

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Hi, I have systemic sclerosis so my raynauds is secondary. I've not had iloprost for a few years now. I decided not to continue as it's never really helped my raynauds, as well as most of the meds. That's not to say that it won't work for you. Iloprost does give me really bad back ache, so look out for that. I have found over the years that raynauds has become the least of my problems. Good luck

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Hi there yeah it never worked for me infact I found that my thumb on right hand stayed longer being purple from when I had it done I also have Ss with secondary Raynauds and being honest I found the iloprost sickly and felt it was wasted time on me but I do know they work for some people as u don’t know until u try

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Hi there, whenever I go in for anything new I try and think of something a friend said to me which is 'This might be new to you, but to the nurses/doctors it is something routine that they do all the time. They are almost able to do it in their sleep'. The unit where you are going give Iloprost all the time. They know what they are doing, you just have to turn up. Sit there and let things happen.

Here are the things that are not pleasant...firstly, Iloprost is an infusion delivered through a needle (cannula) in your arm. I am not a great fan of having a cannula inserted into my arm as my blood vessels are tiny and so sometimes they have problems finding one...but usually they are able to do it with relative ease. Secondly, Iloprost has effects that drop your blood pressure and cause more circulation to move to the periphery. This can have the effect of giving you headaches and general aching. You may also experience nausea. You can have medication to help with these symptoms and as others have pointed out, if you let the nurses know they can alter the rate of the infusion. Lastly, and the main issue for me was boredom. 6 hours on a chair/bed in the hospital for days in a row is not my favourite way to spend my time. So make sure you take things to do, or read, or listen to. Most units allow you to take your Ipad/IPhone/tablet. Take books, magazines...or knitting! Whatever is portable. You might want to have friends come with you for a chat.

You are likely to feel tired and a bit rough afterwards so you will not want much harassment when you get home. You might want to organise for someone else to do the tea/dinner if that is usually your job, or have some easy to shove in the oven/microwave dishes to hand. You will not want to have other activities organised in the evening, unless they involve people coming over and looking after you ;) The same goes for the weekend after you have had the treatment. Don't have any big plans. It is likely you will not feel like it. You will want to rest up.

I hope that helps.

Lucy xxx

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Thankyou so much. I'm worried about the cannula but the nurses there will know what they are doing xx

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Wow a fellow primary raynauds person on iloprsot - welcome to the little gang. As yet I don't seem to have come across many (would be lovely to see from others who have primary raynauds on iloprsot too).

To be honest I echo most other people on here; take lots to do!!!!! It feels like such a long time when you are sitting / laying there.

I take a massive bag of stuff to keep me occupied from adult colouring books, word searchs, admin type stuff (it's not easy to concentrate), pack of playing cards, something crafty, books, I pod and my iPad with wifi and net flicks or iPlayer for those times when you feel a little bit rough and can't be bothered to do anything but need some distraction to loose yourself into.

For me my first iloprsot was not a great experience and to be honest a lot of that was because I was scared and I didn't know what was happening. For me the turning point was on my last day an amazing nurse talked me through everything she was doing and why, she then gave me control in terms of telling her when obs were due and asking if I wanted the rate changing (I hadn't known that was an option until then). You know that saying that you may not remember some ones name or what they look like but you will always remember how they made you feel. This nurse is one of those people she was amazing she came and sat on my bed and gave me a hug and then said let's do this together. For me that really really helped. Now I am a dab hand at having iloprsot, i know exactly how to do it and if I have a new nurse I teach them how to do it. I have been having iloprsot for 8 years now.

For me iloprsot is great it's the difference between being able to live a relatively normal life and being unable to do normal day to day activities.

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Thankyou so much for commenting, I am thinking of taking my partner along with me aswell so I have a familiar face there.

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That will be great if he is allowed to stay. My hospital day unit I go to now doesn't allow anyone to sit with you. The ward I stayed on the first time also had really strict visiting times unfortunately too. It sounds odd but you do end up "making friends" with the other patients though, especially if you go frequently you end up seeing the same people sometimes.

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I am going in for a day unit. So hoping he can stay. He is the only one that really understands what I go through with it. Did Iloprost help you out with your Raynaud's?

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It helps me amazingly, it makes such a difference to me. With iloprsot I can live a "normal" life without iloprsot I really really struggle to do normal things like going to work or shopping or what ever.

When I say normal I mean with gloves etc etc I always wear my big ski mittens all winter, spring and autumn and in summer I wear like average fluffy gloves etc always wear ugg boots and just loads of layers.

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