Length of Iloprost Side Effects following infusion

[Slinky72]

I had 5 days of Iloprost 14/10 -18/10. I found it pretty tough going with the awful side effects. Expected some, however, never anticipated they would be so severe. What is concerning me now is that over a week later I am still really suffering with headaches, lightheadedness, extreme tiredness and occasional nausea. How long do these usually last after the end of the infusion. I really need to be back at work but just feel too unwell. Getting me down and also stressing me out as a result. Any advice would be appreciated. TIA

[GlasgowHen]

Hi Slinky, sorry to hear you feel so unwell. I have iloprost regularly and have never had side effects like you describe afterwards. The infusions are quite tough going and I feel horrible during them but once it’s turned off most of those side effects disappear within half and hour apart from a lingering tiredness and low blood pressure for a day or so.

Not sure of your underlying condition but could it have caused you to flare a bit? Hope you feel better soon.

[Hidden in reply to GlasgowHen]

Im the same as you rolybear, possibly its not connected to the infusion??? Don't rush back to work your health and wellbeing is important. Maybe a trip to your GP is needed. All the best.

[Slinky72 in reply to Hidden]

It's definitely connected as it's the same side effects as whilst having the transfusion although thankfully not so bad. The tiredness has been extreme however that could be exacerbated by my chronic fatigue and am sort of used to that. It's the rest that are making life unpleasant and now concerned going to feel like this for as long as the drug is in my system. Just hope it does actually help after all this! Going to give the GP another call I think. Thank you for your response, it's helpful to know how others have reacted so know if 'normal ' or not!

[Slinky72 in reply to GlasgowHen]

Thank you. I didn't think they should still be lingering on so long. I do have chronic fatigue which means it takes me longer to get over things, however, it's normally around a week longer. I suffered quite bad side effects when I was taking nifedipine that built up over about 3 months, these feel the same but worse. Think maybe I should speak to the Dr again. He did sign me off for 2 weeks but that's not the point! Thanks for your reply.

[MissusTee]

Hi,

I have secondary raynauds to scleroderma, and I stopped going for iloprost 6 years ago despite my raynauds being quite severe. Iloprost gives me an awful headache when I'm having it, considerable low blood pressure ( nearly kidney damage low) and terrible back ache. Having said that I recover pretty well afterwards. I'm just wondering whether you had blood pressure problems? Or some reaction to the iloprost so I would contact the hospital ward/dr and ask to speak to someone.

[Slinky72 in reply to MissusTee]

Sorry to hear it gave you such awful side effects. My blood pressure was fine before and during the infusions, they checked it every 30 mins, and the side effects started to ease within about 30 mins of the infusion ceasing. I'm thinking you could be right as this doesn't sound normal. I think I'll contact my GP for advice. Many thanks

[MInerva]

I’ve been having regular Iloprost infusions for many years and I think the main tip I would give you is to stop when you feel it’s getting too uncomfortable- I stop at level 4 but still have the recommended 6 hours of treatment

The side effects leave me after about an hour so it’s not too bad.

[Slinky72 in reply to MInerva]

Hi Minerva. Thanks for your reply, I'm guessing you found level 4 works for you? I tried level 4 on 3 days but only tolerated for around 90 mins so stuck at level 3 for the last 2. I saw the consultant today who said that was not possible to still be having side effects from the Iloprost even though they are the same, just milder obviously. He also said it's not high enough to work, level needs to be nearer 10!! He's saying I now need to go in as in-patient and have 12 hours of infusion for 7 consecutive days!! Knowing how awful 6 hours for 5 days was, the thought of this terrifies me. It just better work especially he wants me to have it twice a year!

[Fennella02]

I had 3 solid weeks of side effects following my infusions.

[Slinky72 in reply to Fennella02]

That's really interesting having seen the consultant this afternoon who told me I couldn't possibly still be having side effects as the drug has left my body and its all psychosomatic so basically in my head! Knowing you had the same problem makes me feel better. Said hasn't worked anyway and now have to have 7 consecutive days for 12 hours at much higher level than the 3 I tolerated!! That was horrendous enough for 5 days. What level do you have out of interest?

[Fennella02 in reply to Slinky72]

I don’t know. I never made it to the desired level as my BP was at 60/30 by the end of each day. I remember having a week of horrible sickness followed immediately by a week of blood vessels bursting all over me with ridiculous frequency - to the extent that they ran blood tests to check my clotting levels. I can’t remember what the third problem was but it was quite marked, that much I do remember. I’ve never had it again and am currently trialling fluoxetine for the RP. I remember clearly feeling that I’d had very little time post infusion to get the benefit of it. Hope you’re soon feeling better xx

[Slinky72 in reply to Fennella02]

Oh my goodness you poor thing. No wonder you felt so awful. My side effects pale into comparison with those! Thank you. Fingers crossed you get benefit from the fluoxetine. Thanks for replying, at least I knit I haven't been imagining it all! Xx