Are iloprost infusions beneficial?

[MoominMomma]

After my latest rheumatologist telephone appointment, he suggested that I had an iloprost infusion for my Raynauds as for some reason, I seem to be feeling the cold much more just lately. I was wondering if anyone had had this treatment and if it helped any, any side effects & what I should expect. 😊

[OldTed60]

Yes I’ve been having iloprost for 4 and half years now. It is a harsh infusion in my experience but it’s given me back my fingers for work by preventing ulceration and pain for me so I keep going as I didn’t tolerate other Raynaud’s meds, apart from Losartan. I used to get it for 3 days every three months but my veins are very poor so I now get it one day a month instead via a portacth - which is so much better for me. I do need to take 30mg codeine and paracetamol first thing before leaving home and and they give me IV cyclizine first to prevent the nausea. Iloprost triggers my migraine otherwise and I have to stop. But as long as I remember these pre-meds I’m fine now. I take nibbles such as chocolate and a big flask of decaf coffee and baked crisps and drink tons of water as this helps with side effects. Also I take my ear buds so can listen to audiobooks or music and my shades or a snooze band to zone out. Headaches and nausea are the main side effects but they start you slowly and increase it half hourly to see how much you can tolerate.

I know some areas give it for all types of Raynaud’s but in my area people can only get Iloprost if we have Systemic Sclerosis so if someone’s in getting iloprost we can chat, share stories etc. This is not a common an occurrence but lovely when it happens!

[MoominMomma in reply to OldTed60]

Thank you OldTed for your reply. This has put my mind at ease and answered the questions that I had going round in my mind. I’m glad that it brings you relief.

I’ll post with an update when I’ve had the infusion in a fortnight.

Keep warm 😊

[Lyndabickley]

Hi

I have had iloprost infusions once or twice a year for 20 years. Usually 6 hours a day for 3-5 days. It does cause some nausea if the rate is increased too much but the infusion staff here in Lincoln will not increase it beyond my tolerance. ( The first time I had it I had 24 hours a day for 5 days with only a minor headache- I once had it at the Royal Free Hospital and the staff insisted on increasing it till I actually threw up 🤮! ) It usually gives me about 3 months relief from digital ulcers so worth it. I try and tolerate as much as I can. As far as I can it is a rest from daily activities with time to read etc. As soon as the infusion is finished, side effects quickly fade and I am able to drive myself home.

[MoominMomma in reply to Lyndabickley]

Thanks for sharing your experience. I’m going to have the infusion so I need to stock up on reading materials! X

[LilyInTheSun]

I've had iloprost twice now, each time for about 6 hrs a day for 4 days. They should offer you pre-meds first thing to help prevent the headache and nausea, and don't be afraid to ask for these again at lunchtime if they don't offer them. They normally gradually increase the rate of infusion to see what you can tolerate, and you can always ask them to reduce the rate if you are getting too many side effects.

I find the first day the worst in terms of side effects, so if you do happen to have a bad first day, it doesn't mean the rest of the week will be like that! I tend to get some nausea, but it goes pretty much as soon as I'm disconnected from the infusion.

I took some books to read and an iPad (optimistically planning to do all my Christmas shopping online!), but most of the time I felt too rough to concentrate on reading anything, especially as the day went on. I found listening to music through my headphones helped relax and distract me, and I also dozed a bit (we had reclining chairs).

I'm not sure if it helped me, to be honest. The first time I had it was in the spring, and I didn't really feel any difference afterwards (but enjoyed feeling warm while having the infusion!), but they said that may have been because we were coming into warmer weather anyway. The second time I had it was in the autumn, and again I felt warm while having the infusion and maybe for a couple of days afterwards, but didn't really notice any difference that winter - I still struggled with the cold a lot. Saying that, I realise I didn't have an infected finger ulcer for the first time that winter, and have now got an infected finger ulcer after not having iloprost this year, so maybe it was having some benefit. I'm definitely glad I tried it though, as I know it helps lots of people.

So I think it's worth trying to see if it helps. Feeling the cold is so wearying - I often say that trying to stay reasonably warm takes up so much of my energy in the winter. I hope it all goes well for you and that it helps. Let us know how you get on!

[MoominMomma in reply to LilyInTheSun]

Hi LilyInTheSun, I’m kind of prepared for the infusions now after reading people’s experiences. The nausea is an everyday occurrence with me, so, hopefully, it won’t be any worse.

Watch this space for the updates!!! 🤗

[CarerEdi]

My mum has had it diagnosed for two years now. She had mild Raynaud's probably without realising all her life, but being put on heart medication triggered a severe attack. It gave her very severe Raynaud's - they've said based on the blood results it's secondary but that they can't determine the cause. Sadly she can't come off the heart meds.

Last year was a very low ebb with her losing total use of her fingers and eating Xmas dinner with gloves on (in a centrally heated house). We are grateful for the iloprost as it literally saved her fingers which had started to get necrosis and turn black at the ends.

She is lucky - first time she got iloprost, no nausea or headache at all. 2nd time - some mild nausea when they increased the flow at the end but no headache. They were quite good at N&N - they start off small and work their way up with the speed. I agree with the comment that the speed they feed it in is crucial.

I suspect this year, when they asked her if she wanted to slow it down she naturally said yes, fearing the side effects, but paid the price as she then had to get it much faster on the last day to make up for it(which caused her to vomit).

Overall, as I say, she is lucky. No headaches whatsoever. However she gets tingling in the fingers and toes (which really is pain of a sort) after every session. She takes 2 paracetamols a day during the treatment and about a month after (scared of kidney damage to keep taking it for much longer than that).Tingling lasts for a good 6 months or so after the iloprost.

We asked if lidocaine could be given as they do this in the US (as tingling is the worst side effect for her) but they said strongly that it isn't done in the UK as it increases blood flow even more - risk of more serious side effects .

This year, she's much better off now and able to not wear gloves indoors so we are very grareful to iloprost. Her tingling maybe more than people who haven't had a severe attack, the damage last year apparently had caused nerve damage which is unfortunately permanent. She's getting it annually now for 1 week - 8 am to 2pm. She sticks to plain Walkers crisps while on the drip

[MoominMomma in reply to CarerEdi]

Hi, thanks so much for sharing your mum’s experiences. I’m glad that she got some relief from the infusions. Nausea and headache seem to be the main side effects, so hopefully, I’ll be prepared. 🙂

[Gdonnelly]

Iloprost does help but it is difficult to tolerate the treatment because of sickness & headaches. I now get Flolan Infusion every 12 weeks which is much easier to tolerate & with basically same results.