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Merits of Iloprost

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#1 catherinechaos


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Posted 26 June 2009 - 07:20 PM

Hi everyone!

I've searched previous messages but I'm coming up with a blank, I hope someone can point me in the right direction.

My index finger started to shrink about two years ago and is now pretty bulbous and ugly with a finger nail that grows at an odd angle. It's very tender and the skin is damaged. I told my sclero doctor and he said I was losing finger pulp, but now its happening to the index finger on my other hand and also my middle finger.

I have some questions:

Is there a possiblility that this will eventually happen to all my fingers? Will Iloprost help or prevent it happening? I hate having Iloprost but if it would help then I would do it.

I only saw the doctor yesterday but you know how it is when you come away - you've forgotten to ask all the important stuff!

Thanks very much!


#2 Jeannie McClelland

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Posted 27 June 2009 - 06:00 AM

Hi Cathy,

I haven't found any direct references to the use of Iloprost in treating the loss of finger pulp, but since it dilates vascular beds, as I understand it, by improving the blood flow to your fingers, it seems like it might help. Is it what your doctor is proposing to treat you with?

As far as your other fingers being affected, I guess that's another one of those good ol' scleroderma mysteries. Who can tell? Some people's do, some don't, and the time scale varies too.

I think I've ended up with scleroderma just to cure me of my obsessive need to have a definite and final answer to everything. :lol:

I wish I'd come up with a better answer for you.

Warm hugs,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 catherinechaos


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Posted 27 June 2009 - 07:40 AM

Thanks for having a go!

The doctor didn't really specify. They always recommend Iloprost and I try and avoid it if I can but I thought I would try to be well prepared for my next appointment. If it would help my fingers I would have it. I still wonder if it isn't finger clubbing but as you say there are more questions than answers. This is the weirdest illness I have ever come accross. I don't know whether Im coming or going and the doctors seem to know the least.

Thanks for replying

#4 lizzie


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Posted 27 June 2009 - 10:32 AM

Hi Cathy, I have loss of finger pulp-mainly on my index fingers to a lesser extent the middle fingers. I also have Iloprost for 5 days every 3 months. The loss of finger pulp is very slowly continuing, but as I don't know what It would have been like if I hadn't had the Iloprost, I can't really comment on whether the iloprost helps( it does make a big difference to my Raynauds though :) ).


#5 catherinechaos


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Posted 27 June 2009 - 10:08 PM

Thanks Lizzie

I think my fingers must be very similar to yours. I suppose the iloprost is worth a try.