Level of Iloprost Infusion required to be effective

[Slinky72]

I had Iloprost in October as day patient. The main level tolerated was 3. When I saw the consultant two weeks later he told me it hadn't worked as not possible at that level and I needed to be an in-patient for 7 days at a level nearer 10! Since then I have seen an improvement in my condition, so was hopeful I could go for a day patient treatment again,however, he basically suggested at my appointment this week, it was all in my head that it had worked because if all the medications I tried prior did not help, this would not have worked despite me providing examples of how it had helped. I wondered what levels other people have received the treatment at and felt a difference or benefit. The max I was able to have was only 5 anyway so am puzzled by the 10 anyway!

[MissusTee]

Hi,

I put a stop to having iloprost for secondary raynauds several years ago. The only way I'd consider it is if I get an ulcer again. I don't find it tolerable, it makes me feel awful, I don't sleep in hospital, and I don't find much improvement for my raynauds. I think that it's ridiculous that they expect you to tolerate it at such a high level - if your blood pressure drops too much it can damage your kidneys. I've never heard of 10 either!!

Nothing I have ever taken has helped my raynauds, so I've just learnt to deal with it, and when the consultant tries to get me in, it's a big fat no!!

[Slinky72 in reply to MissusTee]

No, I have Chronic Fatigue & the impact of little sleep as an inpatient on top of the treatment, certainly won't help that! My Raynauds is definitely better atm, previously just going out of the house to the car, to a different temperature room or drinking something cold was enough to have a bad attack. All of that has ceased nor am I having my heating on so much, I know it's mild, however, I suffer all year round so I can only think it is that what has helped. I think I might ignore him and try another outpatient treatment ina couple of months. I'm sorry that nothing has helped you. It's such a debilitating condition, people just don't realise!!

[Rp321]

Did you just do one day of iloprost?

There are loads of different protocols and so I’m not sure what you mean by 10.

Lots of people do 5 days of iloprsot and 6 hours per day.

My top rate is 2 or 2.2 ml per hour according to my weight (I sit right in the middle at 46 or 47 kg so some nurses do the 45 kg protcal and some do the 50kg protcal). But the reality is it’s what ever you can tolerate - for reasons totally unknown to me I can tolerate it a million times better through my port a cath than when using a cannula so I can get it up to 2.2 or 2 and leave it there where as before I used to need it turning down. My port broke during treatment and I had to revert back to a cannula for the rest of the week. My goodness the sickness was so much worse and the issue was I had got the extra extra anti sickness no longer prescribed as I hadn’t needed it since the port so we turned the rate of infusion down to 1.7 ml per hour so I could tolerate it. Maybe it did make the iloprost slightly less effective in terms of how long it worked for but it did still work, I can see a definite improvement visually in how my hands look as well as how they feel.

There are some hospitals that give iloprost more frequently and some that use a different protcal. My local hospital tried their protcal on me and we had to give up with that idea as the jump went from 2ml per hour to 3ml per hour and that finished me off and after about 15 mins on 3ml per hour I was done for the day and had to go to about 1ml per hour instead. The point is all people and all hospitals are different, if you think it’s workin then surely that’s a good thing whether in your head or not - your feeling better so surely that’s a job well done.

[Slinky72 in reply to Rp321]

No I had 5 days of 6 hours IV infusion. It started on 1ml increasing every half hour. As soon as it went to 4ml, it became so awful, severe headache like never known, nausea and pains in my face & jaw so they only let me be on it for an hour each day. So the last two days stuck to 3ml. The maximum I could have had was 4 anyway so not sure where the 10 has come from!!

It's interesting to hear you've had results at a lower level. Think I might push for another 5 days as outpatient maybe Feb/March and see if I continue to have results as I suffer year round. Going from my house to the car, to a different temperature room or drinking something cold sets it off and my hands used to go numb of a morning whilst getting ready for work. None of these things are happening no where as near as much as they were and there's no other explanation. I have Chronic Fatigue of which he has no experience and am sensitive to many oral medications side effects wise, so whilst he said it can't work at the level I had, yours working at a lower rate says to me he might be wrong. I actually have no faith in him as the side effects I experienced after were all in my head too apparently!! No they were very real and very awful!!!!

[Rp321 in reply to Slinky72]

How very strange he said it should go up to 10 - if it’s the same strength drug and diluted in the same way how anyone could tolerate 10ml per hour is a miracle. Although I suppose it depends on your size, I’m built very small and what seems like you am very sensitive to all the oral vasodilator medicines. As I am iloprost but those side effects go away and I’m left with the benefits.

Before I have iloprost my fingers are visibly swollen and my skin on my hands is covered in cracks and is really sore. You can see by the end of the five days my fingers are visibly back to normal size and my skin is healing. Did you have any visible signs before and after? Either way if you feel it worked then surely it did.

Maybe it’s worth asking to try again as an outpatient - can you get a second opinion?

[Slinky72 in reply to Rp321]

Well that's what I thought, knowing how awful 4ml made me feel. Within 10 minutes the side effects massively intensified. I'm not big, 5ft 7 and around 10st so I don;t see how I can get to 10 either! Thankfully I don't suffer with those things, just that my fingers react to any minute temperature change, which is now not happening so often and they come round a lot quicker. Previously unless I put them in water, they could take over half an hour to come round and would be so numb it was painful. If I drank or ate something cold it would be enough to trigger an attack which also rarely occurs now too.

From the replies, I do think I will ask for outpatient again especially as my dad started chemo last week, inpatient is just not possible atm as I would be dependant on him & it would be too much plus the risk of infection from having to come in everyday for me! Thank you for your reply

[Hammersbird]

Hi, I live in the UK and have just completed a 5 day inpatient infusion starting at 10ml and going up to 40ml, the side effects for me were very bad, vomiting, migraines and abdominal cramps. Sadly it hasn't worked as I still have very blue almost back toes. Currently been given nephidimine (can't remember spelling) which I start tomorrow along with lots of other medications. The dose of iloprost is reduced as your side effects persist. I mainly stayed on 30ml. Hope this helps x

[Slinky72 in reply to Hammersbird]

So sorry to hear you had such a horrible time with no benefits. I did manage to tolerate 30 in an outpatient setting without too many side effects. About 10 minutes after they increased to 40, the side effects would be horrendous. Despite my consultant stating the dose wasn't high enough to have any effect I can categorically state my Raynaud's has been worse the last few weeks during the heatwave than it was in November & December following my treatment! I was due another treatment in March but delayed due to Covid so hoping to try another & see if I get the same benefits despite the low level. Good luck with the oral meds, I hope they give you some relief, I just had bad side effects on them all & even 6 Viagra a day made no difference!! I am sensitive to oral medication though due to another health condition. Good luck, I hope you find something that helps x