Illoprost - how soon will it start working ?

[rosie_girl]

I've just undergone my first course of illoprost, how long do others find before it kicks in ? I found it quite intense & the max I got up to over the week was 25. How have others found it ?

[Yorky]

Hello, I have had Iloprost many, many times. I my experience I think the question should be how long does it last? It starts working immediately it flows into your blood stream by forcing open the blood vessels, it is a question of how long they stay streched open. I believe that it also thins the blood by making it less sticky and therefore it flows better. I have had it with differing regimes from being in hospital for 5 days with a 8 hour infusion daily to what I have now which is a 6 hour infusion every 4 weeks, which I much prefer as I don't have to stay in overnight, but I have to sit in a chair, no bed to strech out on. They run it at 50mcg in 250mls and I don't go over 25mls per hour. I find it quite unpleasant and always need the antisickness tabs and paracetamol. I am assured that it works and that I need it, so I have it, but really wish that I didn't have too.

[zenabb]

As it widens your blood vessels and allows the blood to flow better as far as possible, it depends whether there is much healing to be done and that takes time. I feel better after about 20 days.

[uknlv]

When I had Illoprost I had immediate results, but I was right back to where I started in about three weeks, so I have decided not to do it again.

[Daisy23]

I had my second week of iloprost infusions the week before last. Although I'm still getting lots of Raynaud's attacks, they don't last as long and aren't as painful. I also feel much better in myself (sorry - that's a bit woolly but I'm not sure how else to describe it!) The problems I have with restless legs and pain in my feet also seem to have been alleviated somewhat. So I'd say I've noticed results straight away, and the same thing happened with my first week of iloprost.

One of the other patients on my ward, who has had iloprost for several years, said it's a cumulative effect - so if you have it regularly it can improve your symptoms over time. I hope so!

It's hard to tell how effective it's been as we've had a sudden dip in temperature so my symptoms may have been a lot worse if I hadn't had the infusions... For me, iloprost isn't a miracle cure for me by any means but I think it does help so I'm going to carry on having it regularly.