Hi all, long post incoming but I need some advice/help!!
I am a 24yo female was diagnosed with Primary Raynaud’s when I was 11 and I suffer with it pretty severely, usual stuff.. not fun.
Have a history of not tolerating Nifedipine which is all they tried when I was younger. Have tried nifedipine and amlodopine and clopidogrel (for the ulcers) with no success and horrid side effects recently (low bp resulting in falling over fainting, headache, etc) and they didn’t really help my symptoms either!! Decided to try again because last few years my raynauds has gotten much worse (attacks now 4-5 times a day, sometimes lasting a couple of hours, v painful, v frustrating and ulcers on fingers/toes).
Given poor tolerance of drugs I enquired with my rheumatologist re the Botox injections I have heard of (he point blank refused?) said I need to try Iloprost infusion.
Cue two weeks ago, off I trot. Unpleasant week but I got on with it, believing it to be a one off thing feel rubbish and unwell for a week and then you crack on. I was there as a day patient, so there 8-4 daily getting the infusion. During the treatment I experienced headaches similar to that of migraine, and was v nauseous, v flushed and very fatigued (no diarrhoea though so I thought myself lucky). My BP also dropped very low throughout (although it is quite low in general).
I perked up a bit Friday evening (which was what happened daily during the treatment), but then began to feel unwell again Saturday lunch time with the same symptoms (migraine like headache, nausea, very fatigued). I’ve been feeling this way ever since and don’t know what I can do!! I got in contact with rheumatologist via his secretary and was advised the only side effects of Iloprost are headache and low BP, and there are no lasting side effects. The first part of this is obviously incorrect, and in my experience the second part is too.
My question is: has anyone experienced similar to this when having Iloprost infusion? How long have side effects lasted?
The GP is currently managing my headache with a combination of naproxen and cocodamol and I’m taking prochlorperazine to help with the nausea. This obviously isn’t sustainable, but the GP doesn’t seem to know what to do, deferring the matter to my consulatant, who has been useless!
Without sounding like a Debbie Downer, I’m feeling very sorry for myself right now and am also incredibly frustrated. This is super debilitating, I’m usually very active (which I find helps my raynauds) and right now I literally can barely cope with going on little walks! I’m good only for snoozing and watching Netflix on the dimmest brightness with the volume right down! Any anecdotes or advice would be greatly appreciated.
Thanks in advance xx
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celvo
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I’m so so sorry to hear how poorly you’re feeling after having Iloprost ☹️ I have secondary Raynauds as a result of having limited Scleroderma and have an Iloprost infusion every October. I too suffer with the migraine headache and bad nausea whilst having it but it usually passes by the evening. For the next week or two I feel completely drained and fatigued (often teary too) and just lay on the sofa snoozing/watching TV although I don’t usually have a headache and don’t suffer with the nausea like you. I’m seen up at the Royal Free and must say they’re brilliant- can ring a specialist nurse anytime if I’ve got problems/questions. I would definitely press on with trying to get your rheumatologist to sort things for you and give you some advice. Whereabouts are you?
Sending you lots of sympathy and hoping you feel much better soon. Hang in there xx
Thank you Stella, I’m based in Surrey. Had my treatment at Crawley, must say that the ward I was on were fantastic. I’m really disappointed with how rubbish my Rheumatologist has been with all of this though, I’ve learned more from this site (I’ve been a lurker but you guys are fab) and trusty Google than I have from him!
Is it two weeks that it takes for you to feel normal again after Iloprost? How many times have you had it? I feel completely pants right now, the infusion doesn’t seem to have done much (I’m still having attacks and it’s near enough 30 degrees here!) and I’m having these side effects! Just hoping it passes soon. Does the Iloprost take effect for you right away, or is it more gradual?
I’ve been having Iloprost for 5 or 6 years now and am fortunate that I only need it once a year. I know some have to go every few months 😟. The tiredness eases after a couple of weeks but I also suffer with fatigue anyway. It can take up to 6 weeks to feel the effect of the treatment so don’t lose heart just yet. It’s a very gradual thing and I usually find that it just eases the attacks. They don’t stop occurring but it’s much better. I also take fluoxetine for my Raynauds and Tadalafil (same med as sildenafil aka viagra! But it has more manageable side effects for me).
I have to have the Iloprost infusion run at a lower rate than ideal as I have trouble with the side effects despite taking codeine and anti sickness meds. It’s a hard week but worth the results I guess.
Hello celvo, just read your post about the ill effects you are suffering with. I have had Iloprost infusions for 3 yrs now, ( once a year, 5 consecative days) can I ask you whilst you were having the Iloprost did you tell the nurses you were experiencing headaches , (they are a normal side effect,) the nurses can reduce the infusion. They usually start at 10mls an hour and increase it to as high as I could tolerate it, having been monitored every 15 mins for the first 2 hours, the most I could tolerate by the end of the day would be 40 mls an hour but that would only happen by day 3! I now have to have the infusion twice a year for 3 consecative days, my next infusion is in September. As regards to how I felt after the whole treatment, I would feel tired, and yes headachey for a few days. Regarding how my Raynauds ( I have secondary) is following treatment, I am aware that it doesnt cure it, but the attacks are fewer and dont last quite as long. I hope this helps and makes sense, sorry I rambled on.
Thanks for the reply fairy. My rheumatologist had me on a comparatively low dose compared to yours I think then! Unless I’ve misinterpreted and they were measuring in something other than ml? I started on 3.2 went up to 6.4, although only managed to get up to this a couple of times as my BP dropped too low (I’m talking 71/38 I think) whenever we got up there, the headache was pretty bad too. Either way it would seem I have pretty pathetic tolerance for this family of drugs!
The nurses were fab, checked my stats every 30 mins and altered dose if felt needed.
I’m glad that the infusion works for you! Do you feel better (in terms of side effects) after a few days then? My rheumatologist responded to say that there are no side effects any of the days after it has finished, it felt quite dismissive.
I haven’t noticed any reduced attack duration or frequency yet, but have read online for some people it can take a couple of weeks? Right now it feels like there’s been no gains for doing this which makes it more frustrating!
Hi celvo, yes after a few days, the headaches ease off, I have to say the first time I had the infusion the headaches did last longer as did the tiredness. But after the 2nd round of it, I had been prescribed Amlodipine and Sildenfil, whether they helped with the after effects I dont know. Like a lot of people I cant tolerate Nifedipine, (severe headaches). I hope you find relief soon, all I can say is listen to your body and if you are not up to doing anything, then dont, and take care, xxx
Sorry to hear how poorly you are feeling...I have had Iloprost for a number of years.Starting twice a year to having it every 4 weeks, also have had it over 10 days on a couple of occasions.Havnt had it for 18 months though.I had the headaches whilst on the infusion but once finished it went, Did feel tied for a few days after...Iloprost can take up to 6 weeks to kick in, but everyone is different....I take sildnifil 3 times a day & clopidogrel once a day (which is a blood thinner like warfrin).I would recommend you ask your GP to refer you to a specialist centre That specialises in Raynauds & Sclorederma as it sounds if you rheumatologist dosnt really know much about the condition.If your ulcers are troublesome and don't seem to be healing you may benefit from them being debrided.Hope you get things sorted and feel better soon
Thank you Glynis. Sounds like you’ve had some intense treatment over the years!!! Hope that you are well managed now though if you’ve not had to have Iloprost for some time.
I am going to ask for a new referral I think. He’s not been helpful, and often leaves appointments to go read books on the matter! So it’s not for lack of trying, he just doesn’t seem to have he knowledge needed.
I’m fortunate in that I don’t really get ulcers in the warmer months - only winter it seems. They are a new(er) thing for me though so that could change, who knows. It’s the attacks that are the kicker for me, I have too many too often and they last too long! The affected areas seem to be getting ever larger too. It’s got to the point where the near constant pain and lack of mobility etc. is just very debilitating. We’ll get there though, it’s just one of those things ☺️
No problem, I have an excellent Specialist and specialist nurses here at Aintree University Hospital Liverpool.I am Well looked after.I have a couple of ulcers on fingers at the moment , so specialist nurses keeping an eye on them so going every week to see them as I have a slight infection.so on antibiotics .
Cause of having the Iloprost so much I just wanted to give my body a rest from it hense why I have not had any for a while....
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