Sclerodactyly (clawed hands) & Iluprost

[SKivell]

Does anyone know if Iluprost treatment can help with Sclerodactyly? I have been offered it to treat my Raynauds and Scleroderma but am hoping it might help my hands and wrists too as they are so painful and disabling.

Thanks

[LucyJean]

Hi there, I am afraid that Iloprost is a drug that is designed to improve the circulation in your hands and feet. If you get pain because of that then your hands will be more comfortable but it does nothing for joint inflammation or any tightening of your skin or changes to your hands caused by scleroderma.All my best

Lucy xx

[SKivell in reply to LucyJean]

Thank you very much.I guess that was wishful thinking on my part!

Best wishes.

[Kilncadzow]

I had Scleroderma back in the 70s and both hands were badly clawed. I was treated with Penicillamine which you don’t seem to hear about now and I made an almost complete recovery. My left hand is entirely normal and my right is only slightly bent. I still suffer slightly with Raynauds but that’s just a minor inconvenience now.

[SKivell in reply to Kilncadzow]

Thank you.I'll look in to that.

Take care

[positivedaybyday]

Hi,

I've had the infusions quite a few times. Personally I didn't feel any benefit though maybe I was expecting too much!

I did have some tests taken at different stages of the infusion which did show it helped with the circulation si obviously there is a plus side.

I take Sildenfil for my Raynaulds & I've found swimming helps a bit with the mobility in my hands.

I don't seem to be dropping things as much these days. I've learnt not to bereat myself as much & accept that my hands will never be what they were.

I do discuss my hands with my Consultant as they do look ugly with bent fingers. At least I'm alive so things could be a lot worse!

It's worth going for the infusion, take any treatments that are offered. I had casts made for my hands to wear at night to try to stop the bending process though its just part of the Scleroderma package.

It was worth a shot but didn't help in the end.

As individuals we all react in a different way to this disease, you may be lucky & find something to help relieve the pain.

Good luck on your journey

Xxx

[SKivell in reply to positivedaybyday]

Thank you. I do agree it is important to stay positive and generally do but before I was diagnosed with Systemic Sclerosis last September I avoided taking medication and hardly ever went to the doctor so this has all been a bit of a shock to the system. I will give the infusions a go though because, as you say, you never know what might help. Every body is different, literally!

Thank you again and wishing you well too.