Iloprost: On Monday I had my first... - Scleroderma & Ray...

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Iloprost

AMDP profile image
AMDP
7 Replies

On Monday I had my first Iloprost treatment and within a couple of hours my joints started ache really badly and my hands and feet became painfully stiff and swollen. It was suggested I stop the treatment for a couple of hours and after that I felt a little better but within an hour of being plugged in again my discomfort returned. It was jointly decided that Iloprost was not for me but two days later I am still suffering the ill effects of it. Has anybody else been through this?

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AMDP
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uknlv profile image
uknlv

I have never had it yet, thankfully, as I have read that it does cause some really bad side affects. I do not know how long you can expect them to last for. I have read that changing the dosage helps alot with it, sorry I cant be more help. Hope it wears off soon.

Ruth462 profile image
Ruth462

Really sorry to hear that it wasn't for you.

Hope you feel better real soon.

Take care

AMDP profile image
AMDP

Thanks

JaneP profile image
JaneP

I'm sorry to hear you are not feeling too good. I had the treatment last December. Initially they were going to give me the treatment over five days, but after three days it was decided I was Iloprost intolerant. I have to admit I felt pretty bad for a few days afterwards, even though I was told there should not be any after affects of the treatment. I just had to go with how I was feeling for a few days and rested as much as possible. Because I was found intolerant to it I won't be having the treatment again, but at least I got the chance to try the treatment and find out whether or not it worked. I do hope that you are feeling better soon. Keep warm.

AMDP profile image
AMDP

Thanks yes, picking up at long last.

Anteater profile image
Anteater

I have Iloprost every 6 months and have been doing for approx 5 years now. It does not suit some people but they will provide you with other alternatives whether intravenous or by mouth. I now have mine continous for 5 days at 0.9ml per hour and find this much easier to tolerate but it does mean that I have to stay on the ward for 5 days. I started getting very bad migraine attacks when I was on 6 - 9 hourly treatment and they suggested the above. But usually when you come off it the ill effects do disappear.

zenabb profile image
zenabb

I have had Iloprost for years now. I have it on the Rheumatology day ward over six hours. I used to have it for 5 days twice a year, then a little more often. Now I have it by choice over 3 days every six weeks in the winter and every three months in the summer. If I have a headache while I have it they give me paracetamol. I get tired while I have it and for some days afterwards, and only reap the benefit about 10 days later. At least it is something they can do for me.

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