Illoprost: Hi please tell me if... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Illoprost

Sally1234567 profile image
5 Replies

Hi please tell me if Illoprost infusion works and if there are any side effects. Thanku

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Sally1234567 profile image
Sally1234567
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5 Replies
zenabb profile image
zenabb

Iloprost dilates the blood vessels allowing more blood to reach extremities which in turn allows some healing to take place. It lowers the blood pressure in the process so you need to be supervised. It may give you some headache and you can ask the nurse for some paracetamol. You may get a jawache when you start eating but it does not last.

Rp321 profile image
Rp321

It works very well for me allowing me to do all the things I want to (I do still get raynauds but its controllable). I do get side effects during the infusion, headache, feel sick, tired and generally a bit rubbish but it goes away when the infusion is turned off and the effects of the iloprsot last for months for me.

Suzyannayoung profile image
Suzyannayoung

Hi there, I've had 4 infusions over 5years, normally Autumn time before it gets to cold. The first one I had was because I have very painful ulcers on my fingers, they did eventually clear up and not something I want to repeat. Since then infusions have kept me ulcer free, I still get raynauds attacks the same but there must be some protection there. My infusions were for 5 days and for 6 hours a day. I tolerated it well, they start you on very slow drip ( each day) and increase as you feel comfortable. Occasionally get headache which goes with paracetamol or can lower dose. It effects everyone differently but I can say that yes it has helped me so much, I would do anything not to get finger ulcers. Good luck .

JessicaEccles6 profile image
JessicaEccles6

I had five days of infusions- and it didn't work at all! Very annoying.

cowhide profile image
cowhide

Had it with no real side effects but they did recommend that I take the anti-nausea pill offered as standard, which I sis. As above, main side effect is lowering blood pressure but that is monitored regularly throughout your treatment. Hope it works for you