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