Continuous iloprost.....how long does it take to work?

[scotgirl]

I had continuous iloprost this week in hospital, went in on Monday and got out today. Does anyone know how long it can take to work? I've had iloprost before but for 6 hours per day for 5 days but this time my consultant suggested trying the continuous treatment as it's never worked but my hands are still blue so not convinced it's worked but really need it to.

[Hidden]

Ooo I'm intrigued. Just received a letter about the iloprost infusion from my consultant. How did you manage on it during the transfusion? As I've not had it can't answer your question

[creditcrunchie]

The answer to this is very subjective even though you probably want more of an objective answer. Illoprost seems to have good results for some and others hate the actual treatment as they cannot tolerate it as it makes them feel ill. I have a week in October of iv Illoprost but I am not convinced that it benefits me long term to any great extent and I guess the only way I could see if it does is to try a winter season without it. I do know that the week prior to my Illoprost I stop taking my nifedipine and by the time my treatment starts I have turned very blue but as the week of treatment progresses this disappears so I think it does help at that time but it only lasts 3 months and the effects tend to have worn off by January when my need is greater.. Currently I am struggling with pain in my foot and I do think that without all the help I get I would return to the situation I was in a couple of years ago and possibly end up losing my big toe through ulceration. So to conclude I will continue with my Illoprost next year but I am going to request if I can leave it a little later and try and roll January over into the 3 months.

[zenabb]

Iloprost dilates all the blood vessels a far as it can even in the head, thus headaches. With blood vessels dilated hopefully the blood is able to reach parts that lacked blood. Then healing can take place and it takes a while. I have found that after Iloprost I am extra tired for some days. If I have ulcers it takes them time to heal. The Iloprost effect only lasts a few weeks. In the winter I have it every 8 weeks and in the summer every 3 months. It helps a lot but it is no magic.

[RosemerryVenet]

creditcrunchie - why can't you have more than one session per winter? I had a session in November and was due to go back in last week but got shingles so I have delayed it a couple of weeks. Surely you can have more than one session of treatment per winter?

[nannysue1950]

Hiya Scotgirl, sorry if I'm being a bit thick here. By continuous Iloprost do you mean that you were on it 24 hours each day. If so, is this because you can only tolerate a very low dosage and so need to have the infusion for longer in order to gain any benefit. I have Iloprost infusions about 3 times a year and each infusion is for 12 hours over a 5-day period. I, too, don't find it a magic cure but I certainly feel the benefit in that my finger ulcers do heal a bit. I think it is psychological as well because there doesn't seem to be a lot we can do about this wretched condition so, at least, I feel I am doing something.

Keep warm

[scotgirl]

Thanks for all your comments! I was on the iloprost drip from Monday at 11am and stopped it at 5pm on Friday. I've had the 6 hour treatment at least 9 times but it makes me really ill and because I can't tolerate the higher dose it's never worked for me so the consultant I've seen over the past year in bristol (was in Scotland before that) suggested the continuous drip to see if that would make it easier to tolerate as they keep you on the lowest dose but should work better as you get a lot more. I still had to have regular paracetamol, codeine and anti sickness meds but it was easier to tolerate although meant I had to spend the week in hospital. I haven't noticed any benefits yet and am a little frustrated with it all as I've tried everything else the docs have suggested but nothing has worked. I also have mixed connective tissue disease which means secondary raynauds is pretty severe. I had 8 medical students come in on Thursday to ask questions and examine me as apparently this is pretty rare.... I guess everyone is different and different things can work for each of us, iloprost is worth a try, especially if nothing else has worked.

I do wonder whether different nhs trusts offer iloprost at more regular intervals, I guess it could come down to money as I was only ever offered it once a year in Scotland.

[Melanie1973 in reply to scotgirl]

I also have mixed connective with secondary raynauds and just finished my second iloprost. I currently have an ulcer taking up most of my thumb and a couple of my fingers have fused to the nails. Hoping it works as am at the end of my tether

[Yorky]

I have iloprost for 6 hours every month, which means I don't need an overnight stay, which suits me fine. Not sure how much good it does, but I am told that it does work and that I need it. As it is the only treatment on offer I have it, although I generally feel rather grim for the 6 hours.