Iloprost - does it help?

[Steph]

Hi, I have yearly Iloprost infusions at the begining of winter, spread over 5 days for 6 hours each day. I am never really sure it helps and have heard that some people have it just one day a month over the winter months. Just wondered what other peoples experiences were?

[Emma2]

I have not had these injections as yet but it is something that has been suggested as something for the future - particularly if I start to develop ulcers. I would be really keen to hear about any side effects you have and whether other people find the treatment helpful. It might help me to make an informed decision at a later date if I need to decide whether to have it or not. I suppose it will be like anything - some people find more benefit than others.

[Steph in reply to Emma2]

Hi, I think it does help with ulcers as I remember one year having it done when I had particularly bad ones. The doctors always seem to expect it to help with the cold but I have never found my hands to be any warmer. It can be hard to tolerate but you can ask them to turn up or down the rate depending on how you feel. I usually get really bad headaches and feel a bit sick but I take ibruprofen and paracetamol every 4 hours from the begining of the treatment and eating seems to keep the sickness at bay (doesn't help my diet though). It can lower your blood pressure but they monitor that. I know some patients also get diarrhoea.

[Hidden]

I have Iloprost infusions every 6months for 5 days in a row and for 6 hours a day. I does work for me as I seem to have had ulcers whenever I go in and they have heald quicker. I don't always tolerate the infusion very well but I have been advised I really do need to keep having it. Have always been under the impression that it was don't over a 5 day period so one day a month is new to me. Good luck

[AshtonRains]

Hello,

I've been having Iloprost infusions for the past 3 years and they do occasionally seem to work for me. They help the ulcers heal quicker, but not necessarily stop them from coming back within a few weeks. I don't tolerate it very well at all, but not many people get the opportunity to have an iloprost unfusion and it may benefit you - so if i were you i'd go for it!!

Hope this helps x

[Yorky]

I have Iloprost for 6 hours every month, the treatment is meant to start in October and run through until April, but as I didn't get any treatment until Feb this year, I shall be having my 4th session at the end of May. Just having the 6 hours means that I don't have to stay in over night. I can't say that I have noticed a great deal of improvement, but I am told by my consultant that it does help and that I need it. It is a fairly unpleasant 6 hours, sickness/ headaches, but as someone else says you can decrease the flow rate if it becomes very bad. I recover almost immediately the infusion is stopped.

[RosemerryVenet]

I have it at a low rate for a longer period of time -24hrsx3 days, which means hospital for 3 days, but with a slower infusion I don't get the blinding headaches. Don't know if it helps. but willing to try anything.

[sueshellann]

I have had infusions for many years, currently I have it every 3 months for 72 hours. I have had Iloprost in the past,but now I have a drug called Epoprostenol; as I could not tolerate Iloprost. Headache and aching bones were my problem side affects. If I have ulcers when starting a treatment they definately start to dry and heal and continue to do so for several weeks afterwards. But apart from that I cannot say whether it is helping. But if I dont get it on time, I know I am over due.