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Vanessa

Iloprost infusion

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On my upcoming stay at The Royal Free I am to have an Iloprost infusion.

 

Since having Nifedipene my Raynauds is much better anyway and if I am careful I can almost avoid having episodes.

 

Have those who have had the infusion found that it has helped with skin softening as I was told that this sometimes happens by the hospital? Have there been any other benefits as there certainly seem to be a lot of side effects?

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Hello Vanessa

 

I hated Iloprost and just wanted to get out of hospital so I was blind to any improvements it made. However my family said that my walking improved dramatically even after a few infusions, I had tight skin almost everywhere and walked like Frankenstein's Bride! I do know that it improved my Raynaud's but it's never been severe.

 

As the disease effects everyone differently so do the treatments, you could have remarkable results from it and I really hope you do.

 

Take care.


Amanda Thorpe

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Hi Vanessa,

 

I have been having 5 day Iloprost infusions at least every three months for the last three years. It certainly makes a difference to my Raynaud's. I have noticeably fewer nicks and sores on my fingers, fewer splinter haemorrhages and fewer attacks after- my hands feel almost 'normal' for a few weeks.

 

My rheumatologist is very much of the opinion that it helps with skin softening. I'm not sure whether it has had an effect on my skin as I was also taking Cellcept and am now taking Methotrexate. However, my skin which had started to progress quite rapidly, has definitely softened, although don't know how much of that is due to the Iloprost and how much to the immunosupressants.

 

One benefit I have noticed is that my nails grow and are in much better condition for some time after an infusion! Iloprost does have side effects- headache and nausea being the most troublesome for me- but I have minimal problems now that I have the Iloprost infused at a lower rate (1ml an hour) continously for the five days, instead of at a higher rate over 6 hours a day. I don't know whether the Royal free offers this option? I think its certainly worth giving the Iloprost a try - as Amanda says it may have real benefits for you.

 

Lizzie

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