How often do i have to take iloprost ? - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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How often do i have to take iloprost ?

papardeles profile image
5 Replies

Hi , I am 56 years old I have scleroderma about 9 years or so and for 5 years I have ulcers on my hands and sometimes on my legs . I had iloprost infusion in 2011 and 2012 once a year . How often do ihave to do this treatment to see results ? Because i still suffer from ulcers .

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papardeles
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5 Replies
Struth profile image
Struth

I actually had illoprost infusions but with little improvement. Postaglandin was better for me as a pre-winter infusion with a picc line. It's a bigger deal but was a better preventative treatment and helped to clear ulcers that I already had. I probably had it for 4 years but am now coping with other meds and have just got through a year without infusions. All the best.

zenabb profile image
zenabb

I have Iloprost every two months in the winter and every three in the summer. It has kept me ulcer free. Having it once a year is useless.

papardeles profile image
papardeles in reply tozenabb

How many years do you have iloprost? In what condition is now your skin? Are you condinuing to have iloprost?

Yorky profile image
Yorky

Hello, I have Iloprost for 6 hrs once a month (except Jun, Jul & Aug). This has kept me ulcer free up to now, but if you already have ulcers I think you will probably need longer sessions

papardeles profile image
papardeles

Thank you very much for your instant reply.

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