My Dearest has been admitted to hospital for an Iloprost infusion. Starts tomorrow. I will let you know how effective it is, whether he has any side effects. I will sleep with my fingers crossed

Hi there. I know it’s been a while but I just saw your post. May I ask if the lloprost infusion went? To be honest I am not familiar with that procedure but I’m always scanning through looking to see what is helping others. I hope it went well please let me know if you have a chance. Take ca

Hi Alina,

Well, to to be completely honest it was not a honey moon like the case with Tilly who had a complete remission for a month but who, went back to the pre-treament symptoms after that. However, my husband's attacks have reduced after about 2 days post hospital, he is still much better, not well enough to leave the house but he appears happier and can read a book on the bed with just the fan on not having to keep his feet on ice all the time. And he did not have a lot of side effects from the infusion, just a severe head ache that was helped by strong pain killers he got in the hospital.

His feet are the worst but his hands are affected as well. They are in the state his feet were 7 years ago.

In WAustralia a patient has to be admitted to hospital to have an Iloprost infusion. My husband had 3 infusions 6 hours each, one a day so it took 3 full days in hospital.

We are just entering our very hot summer here in Western Australia so this is not helping. We had another air-conditioner installed in his computer room just make his life a bit easier.

Take care



I am so sorry. That is a lot to go through and still not be well enough to leave the house. At least it sounds like it has made a difference though. I have seen where some people have had the infusion multiple times and seem to have varying results with the same patient and the same infusion. I am so lucky to have a supportive loving husband. It’s great you have reached out to learn more so you can help your husband. He is a lucky man.take care