ILOPROST

[Davros]

Has anyone had it? I have had Scleroderma for 20 years and often have cuts in my hands and fingers that are referred to attractively as "Mechanics Hands" (not digital ulcers). The last time I saw the Rheumatologist I asked about Iloprost because a friend has had it for his Scleroderma although his symptoms seem more arthritis-like than mine. At the moment my hands are absolutely fine but, when they are covered in cuts (imagine lots of the worst paper cuts you can), I would do almost anything to treat them. So I have been booked in for Iloprost which is FIVE days on infusion for a number of hours each day (4 or 5 I understand). I don't want to do it!! What does anyone with experience think? Am I being awkward and should just get on with it although my hands are fine at the moment, its a massive time commitment and the Rheumatologist didn't suggest it anyway? Please help.

Bump!

A relative has had this. It made her feel pretty ropey whilst it was infusing but she said it really made a difference for a while afterwards so she was pleased she had it and has had it again since.
Her advice was have it run at a slow rate even if that takes a bit longer as she felt much better for that.
Good luck

Thanks so much for your reply too!

Hi Davros - my sister had schleroderma and had iloprost infusions - I seem to remember that she felt a bit nauseous, but it made a difference, and she had antiemetics prescribed - but she was a vommity person anyway!

She had more raynaudy stuff going on - it did help though!

This is my issue, I don't have much Raynaud's involvement but I sometimes have the lovely Mechanic's Hands. I'm not sure how appropriate it is for me given its 5 days in a row, taking up most of each day. I may be in a fool's paradise as my hands are fine at the moment and have been for a couple of months, but that can change very quickly.

Is there anything that triggers your mechanics hands? Is it something that you have a chance of predicting through experience? Obvs raynauds is worse when cold -and in winter - does that have the papercut effect on you? Or is it out of the clear blue sky - how often do you get it? (sorry for all the questions pmsl!)

It seems to disappear whenever I'm away from home which has recently been going away on holiday, and a hospital stay. I have wondered if it's hard water different cleaning or soaps don't seem to make a difference and it doesn't matter if my hands are in water as we swim a lot on holiday. I've had PUVA, used various creams, keep my hands warm in cold weather and nothing helps when I've got it. But I can't stand the idea if 5 whole days for treatment when I'm ok at the moment but that could turn out to be famous last words