Has anyone tried continuous illoprost for 5 days?

I was at the connective tissue disease clinic on Thursday in Bristol. I have mixed connective tissue disease and my raynauds is really bad. I was under a consultant in Scotland until October 2011 and she'd tried me on every drug she could think of (which never made any difference) and given me illoprost around 9 times but it never really worked well as I could never tolerate a high dose and it generally made me ill. The consultant I've seen in Bristol has been pretty good, he's put me on losartan but I haven't felt that's made much difference and he suggested trying illoprost but rather than having it for 6 hours a day for 5 days and gradually building it up they would give it at the lowest dose but for 24 hours a day for 5 days so that you get much more but shouldn't get the side effects.... I said I'd try it so they will hopefully confirm in the new year. Has anyone else tried it?

4 Replies

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  • I also used to have a gradual build up over 5 days, getting to a very hig dose but I got the most horrible headaches and became quite ill. I now have the lowest dose for 3 days continuously and take paracetamol to stave off any side effects. I am fine with it and do not have any problems at all.

  • Hello, I always have Iloprost over 5 days for 24 hours per day now - its is the only way I can tolerate it. Used to have it for 5 days for 6 - 8 hours but felt so ill on the high dose also got terrible migraines and nausea whilst I was on it but not anymore. Do try it over the longer period I hope you will find it much more tolerable.

  • I don't have continuous for 24 hours. I have it over 6 hours and go home, repeated for 3 days. I take paracetamol if I have headaches. I don't know if that helps you.

  • Thanks guys! When I had it for 6 hours a day I used to insist on paracetamol and anti sickness drugs before I even started the illoprost but it still made me pretty ill. Also one time I had the canula taken out on the Wednesday, went back in on Thursday to get a new canula and was sent home as they couldn't find a doctor who could actually get one in.... very annoying! I'm really hoping if I have it continuously I will not have the bad side effects but it will actually work as I'll get a lot more of it.... we'll see!

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