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Iloprost infusions

Kat201 Message
5 Nov 2010, 11:47 PM

I'm going to be having iloprost infusions form my raynauds. Has anyone had this and more importantly did it work? Katrina x
alison1967 Message
6 Nov 2010, 08:47 PM

Hi Katrina I had Iloprost infusions for my raynauds. One of the first symptoms I had of these diseases kicking off was a purple index finger which seemed to have everyone worried more than anything else. They talked about me having a sympathectomy if it didn't improve. The Iloprost didn't work at first, but I had problems tolerating the full strength, so they ran the infusions at a lower rate. The first night they started the IV off at a trial rate, and after half an hour, they checked on me and upped the rate, and left me. The jaw pain was unbelievable and I got so upset, they decreased the dose, and then tried again, but it still caused side effects so they ran the IV for 12 hours at a slower rate. The next night they were ready and gave me strong pain killers half an hour before the IV, but although I managed a stronger rate, I couldn't tolerate the full dose. I ended up having ten nights of this, I was hooked up to a blood pressure monitor on one arm, and the IV in the other arm, with O2 mask on, not the best 10 nights sleep ever! We did begin to see improvements after the 9th and 10th infusions, with my finger not being quite so purple, but it wasn't overwhelmingly improved. My doctor has talked about more Iloprost at some point. My finger is a better colour now, goes a lovely shade of purple in the cold, but mostly is pink but just feels icy cold most of the time. I would strongly recommend that you have pain relief before you start the infusions, or that if you start to have pain/facial flushing, you ask to stop the IV and wait until you have had some pain relief before its resumed. I take nifepidine, aspirin and losartan for my raynauds at the moment, and have to wear gloves most of the time, especially now the weather is turning. When are you due to have your IV's, I hope you find them a benefit, it's worth a try if you are having problems with ulceration, and any small improvement is a good thing. Take care Alison
Kat201 Message
9 Nov 2010, 07:28 PM

Hi Alison I will bear all this in mind. I am starting only on a small dose as prevention because my hands aren't to bad at the moment, well for me. So hopefully it won't be to bad. I don't know when yet but I hope it's soon because I'm really beginning to notice the change in weather. I'll let you know how I get on. Katrina x