Iloprost

[blueberry20]

I had 5 days of Iloprost infusion for the first time last week. How long is it before you usually start to feel the benefit?

[fairy56]

Hi blueberry20, from personal experience about 2 to 4 weeks. I dont seem to have as many episodes of Raynauds and they dont seem to last as long. I have Iloprost twice a year now so my next session is the end of March. I am hoping that we dont have a severe winter, if we do, it will be a good test as to how well the Iloprost works. I hope this helps, take care and stay warm xxxx

[MissusTee]

I have quite severe raynauds with my scleroderma, and I never get much benefit from iloprost, so I don't have it anymore.

[positivedaybyday]

Hi.

The same for me I'm afraid, I didn't feel much improvement. My consultant thought I had benefited, maybe I expected too much!

[TJme]

hi blueberry20 when I had my first infusion my hands and feet were already in a terrible state , I was threatened with amputation , three days in from the start of the infusion my hands and feet started clearing , I was definitely feeling the benefits 2 weeks later , although the Raynauds was still apparent ( blue Hands ) all of the ulcers had cleared up .It's probably down to each individuals system how they benefit or not from the meds .I don't tolerate drugs very well which is why I think it worked for me .

[kimbalina]

Hi blueberry20

They advised me it could take a few days to a week. Unfortunately I did not receive any benefit.

I had the iloprost for moderated fingers. I have found that trinitran angina patches work much better so never repeated the infusion.

Good luck hope it works for you as I know many people swear by it.

Kind regards,

Kim

[kimbalina]

Sorry predictive text. Not moderated - moderated.

[kimbalina]

Ulcerated

[blueberry20]

Thank you for all your replies. I'm not really feeling very confident now that it will make much difference but I will wait and see. Fingers crossed.

[MEW53 in reply to blueberry20]

Worth giving it a go, I had it when I was first ill with Scleroderma, I found it very tiring and had many sessions. Everyone is different what works for one doesn’t necessarily work for someone else. It’s worth keeping a diary cos that’ll give you an idea how the treatment goes, I kept one and kept track of events and how I was feeling, it was very helpful, my consultant liked the idea too.

Good luck😀

[GlasgowHen]

I start to feel the benefit during the infusions. I have them for 3 days every 4 weeks. In between the infusions I generally start with chilblains and occasionally ulcers but they heal up very quickly because of the frequency of the infusions. I think if I had them a few times a year I would be in a terrible state. We all seem to be different how we respond to iloprost, I can actually feel an intense throbbing at the base of my blue fingers during the infusions and sometimes in my palm and then a warmth of the fingers. It is quite a strange sensation and occasionally it has happened finger by finger which generally draws a crowd of nurses and junior Drs...

[JodieBelll]

Hi guys, in a few weeks I'll have my first iloprost infusion at the Royal Free. I would love some info on what I can expect! Any tips on what to bring and what about eating?

[blueberry20]

Hi,

I had a nasty headache and was sick so I didn’t eat anything at all. But it improved in the evening so I could eat dinner and breakfast. I took lots of things to do but wasn’t up to doing any of it however other people don’t get side effects and can read, eat etc so you will probably just have to wait and see how it is for you.

Good luck

[JodieBelll in reply to blueberry20]

thanks so much!