Iloprost

[Anne1966]

Well, not sure how long it takes to work, but got to say, absolutely no difference after one week, hands still rubbish & toes not much better. Sad times.

[Hidden]

Hi Anne

Sorry to hear that you have no changes but they do say it can take a few weeks for some people. I just finished a week of it and I am undecided about it . I did lose the numbness a little in my hands but now can feel the pain more and like you toes no different.

I do hope you do get some benefit from it , even it it takes a few weeks to kick in .

Good luck . Lynn

[zenabb]

There is no magic to it. It tries to dilate your blood vessels as far as possible, that allows a better blood flow all around to allow the blood to do its repair job. It takes a long time and repeated times.

[JayneO]

I felt a big difference on day 4, and even now nearly two months on my hands are much more flexible, I am wondering that as I am now on mycophenolate (last six weeks) if maybe that is playing a part? Who knows! Stick with it maybe it's going to be slow kicking in. I also take Sildenafil for my PAH so that is helping as well.

Take care

Jayne

[MEW53 in reply to JayneO]

Strangely enough, although I had several iloprost infusions at the beginning of my illness they did make a slight improvement, the difference when I moved onto mycophenolate was amazing. I think some drugs work well for some people and some don't, you have to be patient and it can take a lot of time to see any results.

Margaret

[Hidden]

Anne, may I ask how long have you been suffering from Raynaud's? What a disappointment! 😩😓 did your consultant tell you how long it might take to start working? I am on MMF but it does not help my Raynaud's at all. I certainly will need to be realistic. Thank you for sharing.

[Anne1966 in reply to Hidden]

Only came on after I had carpel tunnel release surgery last July'ish, deteriorated quite quickly, but not connected apparently.

[tredgirl]

I couldn't tolerate a high dose of Iloprost so my consultant has put me on Sildenafil. This seems to be doing the trick. Good luck

[Jensue in reply to tredgirl]

Iloprost didn't help me either but have been using liquid prozac (which did help a little) but consultant has tried me on Sildenafil which I started November time & that does seem to be helping much more. Its a strange feeling having warmer hands & feet and attacks being so much shorter & more mild than before.

[1Stella]

Hi Anne

Hang in there - I have had Iloprost 5 times now and find that it can take up to 6 weeks for it to really take effect. I have it in October so that I am ready for the colder winter months. I am also on Sildenafil and fluoxetine which seem to help. Hope you feel some benefit soon. Take care.

Sarah

[Steph]

Hi, I have yearly Iloprost but never feel any immediate benefit. However I have not had finger infections since having the infusions so it must be doing something. It just doesn't seem to make them warmer or more mobile.

[fruitpastle]

Hello everyone..just reading ur comments on iloprost..I am heading in the morning for my first ever infusions..and am apprehensive on the whole procedure..I really hope its worth it..Im not looking forward to it at all wish someone could make me feel better about it but i know we are all in the same boat!!

[Anne1966]

Quick update, saw my rheumatologist yesterday, iloprost not touched my raynauds, if anything it's got worse, so, more bloods to be done & waiting on an urgent CT & MRI of my chest after telling him I get really breathless, then see him again in 2 weeks. Bit concerned, not sure what's going on now. Anyone have any ideas 😯 xx

[hayleyt14]

Hi

I had my second iloprost in November, and this time I was told that I'd notice is difference in 3-6 months. I have just started to notice an improvement in my hands , I'm definitely have less attacks. I had no difference after my first iloprost but I was encouraged to give it another go and I'm glad I did