Illoprost infusion

[Dka48]

Hi guys, well just had my first illoprost infusion I was admitted as an inpatient and come home last night. My first session was terrible and I nearly refused and come home. I live I cornwall redruth and not a lot of people with raynauds/ scleroderma down here, my first in fusion was started last sat where at first was all very good on 10 Mls per hour after 3 hours the nurse decided that she would up to 20 Mls hour later 30 Mls then my problems began sickness fever flushes dizziness well they stopped straight away, I was being monitord every 15 mins blood pressure temperature and heart , I was so poorly for a few hours after and I was going home as soon as I had felt ok to dressed, until a lovely nurse called Lesley came up to see me from the day care centre we had a lovely chat and she explained that she is in charged of these infusions and told me not to go just give it one more day on 10 Mls for the 6 hours treatment as she would stay with me throughout, so I thought ok so true to her world we started treatment the next day on 10 Mls and she monitored me every 15 mins . It was fine so carried on and completed the 5 days I wil maybe not see no change for upto 6 weeks or after another course of infusions, but am fine glad I stayed will go back for another course, the treatment has made me very hungry though where normally I have so little appetite and a bit like cold symptoms due to the fever I suppose and sneezing abit. Would just like to share my experience with others and thank u guys on here who shared your experiences with me, but I will add I could only be given the lowest dosage I know but if u have or are going to have this treatment I do recommend xxxx

[Hidden]

Hi Dka48, yes I'm curious about it, my Rheumy has recommended it and seeing her next month to discuss. Nervous though. You say you recommend the treatment, what differences have you noticed?

[Dka48 in reply to Hidden]

Hi at the moment up and pottering around indoors hands don't seem to be as blue I've not but my silver gloves on as yet, but it may tale a little while or another course before I really get to see and feel any difference xxxx

[Hidden in reply to Dka48]

MMmm (pondering) I may go ahead.... Seeing Rheumy end of June.

[Dka48 in reply to Hidden]

Well if it helps I say go for it, will be going back as a day care next time, I was very nervous I don't mind saying especially when I had the bad reaction but, after that was , the only other thing was boredom on a drip for 6 hours took me iPad for past time xxxx

[Bee346]

Hello Dka48....interesting that you say not many people in Cornwall with Raynauds here. I personally know quite a few people who have Raynauds as part of ME.CFS. Hope you treatment proves useful. Which consultant did you see?

[Dka48]

Hi bee346 sorry not many with the systemic scleroderma I have come across I should say , I'm under prof Denton for the royal free in London, and dr Davis from rheumatology at treliske/ west cornwall, xxxxx

[Bee346]

Hi Dka48...no need for apology.... I have no experience of nor do I know anyone with s.s here in Cornwall. I feel very sorry for you ...I understand it is a very nasty illness....Raynauds is bad enough! Is Dr Davis in Prof Woolfe's clinic...a new young man? at RCHT etc I expect you had Illoprost at Royal Free did you? xx

[Dka48 in reply to Bee346]

Hi, name does not ring a bell, illoprost. Was arranged at west cornwall penzance but can be performed at treliske xxxxx

[living-the-dream-ssc-ray]

Hiya dka thanks for sharing your Iloprost experience !

I am so pleased for you that you stuck it out and tolerated it. Your nurse 'leslie' sounds like an angel in disguise

personally there is no way I will ever put myself hooked up to that stuff again ! its like marmite haha - and I dont like that either ! within a few hours of day 1, my head felt as though my skull was restricting and wanted to explode ! and that was after taking co-proxamol pain killers as well as the anti sickness tablets. and personally I did not see a reasonable enough benefit to keep putting myself through the 5 day process !

thanks for sharing and posting your experience though ! x

[Dka48 in reply to living-the-dream-ssc-ray]

Hi, on my first day after 5 hours I never nearly wanted to see a drip again but,,,, so so pleased I did and I guess everyone is different , but hey I did it and very pleased xxxx

[blubabe in reply to Dka48]

Hi DKa. Ive been diagnosed with MCTD but lived with R&S for over 10years. My doctor would like me to have this treatment. Im scared because I don't have much luck with meds, when I was prescribed a standard dose of nifdipine tabs (20mg I think), I was severely sick and suffered migraine symptoms so they halved the dosage to ease my suffering. I haven't managed to find any meds that help me cope for any length of time. I'm underweight and depressed and worry the 5 day intravenous illoprost will cripple me. Wondering if I should book a few days off work when the appointments arrive? Im trying so hard to cope with a full time stressful job and try to give quality time to my 7yr old and hubby who doesn't really understand.

[Dka48 in reply to blubabe]

Hi blubabe, I've been on all sorts of meds and can say the ones in on seem to be doing the job, but I do have bad days still, the infusions have made me feel a little unwell no different to any other day really , I too so under weight the infusions made my appetite jump up a tad I've ate really well it's my second day at home . Wow u work still amazing I would love to return to work , I'm single now as partner left me due to my condition which suits me I will admit my son is 27 and is my rock plus my parents o I'm lucky to have lots of support , if u do decide to go through with it I'd take a week to recover as I was told that it would be about that long, in all fairness as I said I don't feel that bad at all, and I know only my first session 2 days without wearing my silver gloves indoors and no heating on today so, o far so good let us know how u get on.dawn xxxxxxx

[RosemerryVenet]

I cannot believe you could tolerate such a high dose! I have Iloprost infusions 2-3 times a year, but am on 1 ml per hour for 3 days solid. I used to have it high over a short period but was so ill. If you have a smaller dose you don't even know you are having the infusion except for a bit of a headache - nothing a couple of paracetamol won't help.

[Dka48 in reply to RosemerryVenet]

Hi rosemerryvenet ,wow I was quite good then o tolerate 10 ml was great for me only pain I had wad the drip needle bruised my arm , now all colors of the rainbow, but I will definitely going back for sure xxxxx

[chrissieH]

I too l have S.S. and Raynauds and live in Cornwall. I'm mainly under Royal Free but also Treliske occasionally. I see Dr Davis but I know there is a Prof Wolfe whom I've never managed to get to see. Had Illoprost in London a couple of times. Found it hard to start with but nurses altered dose to suit me and then I just had to put up with the horrible headaches til I came off the drip each day. All I can say is aren't we all so lucky to get such wonderful care from all these people. Best of luck everyone

[Dka48 in reply to chrissieH]

Hi ChristieH , I feel privileged to have such a wonderful team behind me, I've got no end of support from prof denten in London and dr Davis in treliske, I'm just about to take part in a case study in treliske for junior doctors which I'm looking forward to its all about getting this condition recognized , yes best of luck to everybody maybe once weather gets a bit warmer to suit us magical people see how of us in cornwall there is to meet up for coffee and exchange ideas xxxxxx

[chrissieH]

Sounds like a good idea. I'm off to the sunshine for a while but if you think we can get a group together later in the summer(if we have one) I'll certainly join in.

[redtommy07]

Im not surprized you were so poorly ! far too high a dose ! I have iloprost during the winter, but here in yorkshire it is given at a very low dose 1ml per hour over 24 hrs which is fine , only get a headache which is managed with regular paracetamol, hope your experience has not put you off and that you get some benefit from it , take care

[RosemerryVenet]

Exactly the same, redtommy07

[Yorky]

Hello, I have Iloprost for 6 hours once a month, starts at 10ml, after half an hour goes to 20ml and after another half an hour goes to 25ml and stays at that for the remaining time. It's just about tolerable. Hope it helps you. I am assured by my consultant that it works.

[Dka48]

Thanks Yorky, yes I have had so much information now and I will stick with it xxxxx

[VanessaJoanne]

I am in Royal Free Hospital right now having iloprost. There are three other ladies in this ward the same. We are all under Prof Denton.

I always have .9ml/hour. On 24 hr infusion. There is something TERRIBLY WRONG with the dose you were on. I am not surprised you felt terrible.

[Dka48]

Hi just read your comment , yes the problem was that the nurses weren't familiar with this treatment and reading through paperwork as going along but we got there in the end and it hasn't put me off, I will be going back for second course, I wish u all the best xxxxx