Iloprost

[Jacko37]

Hi, does anyone have side effects from Iloprost that goes on for weeks and weeks? Also, has anyone else had Iloprost since Covid and how do you manage with Waring a mask all day? I'm meant to be having it at the end of November and not looking forward to it at all, take care, Xx

[Bec-Ray9]

Hi, I had my 5 day infusion 2 weeks ago. They make you wear a mask in and around the hospital but obce you’re sat down where you will be for your infusion you can remove your mask. Just have to pop it on to go to the toilet and upon leaving again. I found I was less tolerant since o last had it - had my very first infusion in may. Not sure if it’s due to the covid vaccine or anything or if I’d simply forgot how draining and intense it can be. Apart from that I’d say you’ve got nothing to worry about and o feel like this infusion is already having a positive affect on some of my symptoms unlike the last time.

All I can say is make sure you take a good book/magazines/ iPad to keep you entertained.

All the best for the end of nov

[Jacko37 in reply to Bec-Ray9]

Thanks for your reply, I'm glad that you have benefited from Iloprost. I've found in the past that I still get the ulcers but maybe not so bad. Just a shame that it has to be 5 days in a row! Ych!

[Hidden]

I have been getting 3 monthly Iloprost since June last year. For me it’s 3 days of 7 hours at max dose. I did get headaches and severe nausea but now get given codeine 30g and paracetamol plus IV Cyclizine first and it’s fine although I have to top up paracetamol later. Day 2 is normally the worst. As has been said you can take your mask off once seated and only use it to go to toilet or when you leave. For me it helps a lot with the pain in my peripheries and prevents tissue damage and I feel better after it once I’ve recovered from the constipation and exhaustion of sitting for so long in one position. It helps if I go for a walk afterwards.

[Jacko37 in reply to Hidden]

Thanks for your reply, I think it's the sitting down which is the hardest part! How do you find Iloprost through the summer? Does it help through the summer?

[Hidden in reply to Jacko37]

Yes I admit I take many props such as a neck flight cushion and one for my knees too. It was better in the hospital where I started (a more Covid safe one) as I had a bad time first day so they gave me a room to myself and kept me overnight so I had a bed. This way it was more peaceful and no interacting with others who were coming and going. And one of those adjustable beds. Now it’s in the bigger hospital and hard to ignore others and snooze.

My first ones were during a heatwave and terrible side effects but at least the painful blisters on finger tips and pain seemed to disappear overnight. I have Erythromelagia as well so not sure how it helps but it just does.

[Jacko37 in reply to Hidden]

I'm sure I've got Erythromelagia as well, sometimes I don't know what's worse, the ulcers in the winter or the intense burning in the summer! Take care

[Hidden in reply to Jacko37]

For me the EM is more painful and causes actual burn blisters but I’ve not really got the Raynaud’s ulcers yet - I get painful EM in my hands directly after Raynaud’s attacks. It’s a bad combo for sure xx

[Slinky72]

Despite my consultant telling me it is not possible to have side affects after the infusion, just having had my third one, I know very different. I suffer with chronic fatigue as well, which makes me sensitive to some medications, and I am left with bad fatigue after and also the bad head, nausea and other side effects you experience whilst having the infusion. They lasted two weeks after my first infusion, 6 weeks last year, however, as the infusion I received this time (18 October) was diluted, the side effects during the treatment were slightly less horrific and I am not feeling as unwell following as usual and am hoping to return to work later this week as a result . I am lucky in that they give me my own room, with a bed, every day which helps as it's more comfortable, there's less noise and I can have the lights off, all which help as I find it difficult to read or anything after the first couple of hours, I then also don't have to wear a mask other than walking in & out and visiting the loo. If I had to sit with a mask on for the 8 hours I'm in there, it would be pretty unpleasant given how awful the treatment makes you feel anyway. Fingers crossed, as others have said, you won't have to wear it all day.

[Jacko37 in reply to Slinky72]

That's really interesting. For me the first day is always the worse and even though the side effects during the infusion are horrible it's the way that it makes you feel for weeks after that is the worse, it just goes on and on!

[Slinky72 in reply to Jacko37]

I've found it different each of the 3 times I've had it with regards to side effects during treatment, although I usually find day 3 the worse though, mentally and physically! At least we know others have side effects after as well and 'not in my head' as the consultant tried to imply when I raised it with him! Fingers crossed the next one won't affect you quite so much. Good luck 🤞