Iloprost: I had 5 days of Iloprost... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

10,799 members5,388 posts

Iloprost

blueberry20 profile image
13 Replies

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?

Written by
blueberry20 profile image
blueberry20
To view profiles and participate in discussions please or .
Read more about...
13 Replies
fairy56 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
kimbalina

Sorry predictive text. Not moderated - moderated.

kimbalina profile image
kimbalina

Ulcerated

blueberry20 profile image
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 profile image
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 profile image
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 profile image
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 profile image
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 profile image
JodieBelll in reply to blueberry20

thanks so much!

You may also like...

iloprost for scleroderma

azathioprine but am going in tomorrow for 5 days of iloprost. Bit nervous and somewhat dubious...

First iloprost infusion

consecutive days. I’m also worried about not being able to nap as I can’t function and start to...

First day of iloprost

separately. Well the first day of iloprost is over it went well, got the headache and pain in...

Iloprost intravenous infusion

consultant has suggested a 5 day Iloprost infusion via IV. Has anybody else had this and if so was...

iloprost infusions and work

hi all, those on regular iloprost infusions how is this managed by your employer ? ie is it taken...