My first blog

I enjoy reading everybody elses blogs (it's good to see other peoples experiences and know you are not alone), I thought i would add one of my own.

I'm having iloprost this week, luckily its at a day unit so I get to come home.

My morning started badly as my Raynaud's was out to get me (ice queen is a fitting description lol) when trying to get a canular in every time the needle got there the vain would constrict (this was even with heat packs), eventually they got one in and i got started.

Four hours in I felt terrible, five hours in I wanted to turn it off, rip out the line and go home. Then I gave myself a good talking to (in my head mind you lol) and reminded myself of how good things will be after. Three months of having Raynaud's that doesn't cause so much pain, or limit the use of my hands, or make me feel so unbareably tired, doesnt cause really bad chilblains and being able to do all the activiities I want to do (yes I will still need some really light gloves when it gets below around 19 degrees, but i dont mind thats what us smurfs have to do).

Don't let my comments put anybody off having iloprost because as I have said although it makes you feel rubbish, it really does work and in the grand scheme of things 5 days of rubbishness for three months of having raynauds under control I personally feel its well worth it.

Tomorrow I am going to walk onto the day unit and remind myself that although I feel bad now I will be enjoying the benefits soon enough!

19 Replies

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  • I have heard that if it goes in more slowly it doesn't cause as many side affects. Maybe an extra hour in the chair would be worth having it distributed in slower? Hope it isnt so bad tomorrow!

  • I agree. I know how bad it can be, but I now have it at its lowest for 3 days (good rest away from home pressures, being waited on!) and I don't feel ill at all. No blinding headaches or nausea.

  • You are taking the right approach - grin and bear the horrible bit to enjoy the benefits. Hopefully it will be over before you know it!

  • Hi Kaz

    I used to have Iloprost over 8 - 10 hours and was able to stay in a hotel after.. However, I started getting really bad migraines so it was suggested that I had it continuous over the five days - which I have been doing but it does mean that I have to stay on the ward. It used to be a unit for Iloprost patients so there were beds available for this treatment but now they are going back to the old system where the ward will be open from 8am - 8pm no beds but reclining chairs. I have tried it in these chairs and it killed my back they are most uncomfortable - but may have to go back to this old way..... Now, if I have it ongoing I will have to be admitted to the Rheumatology Ward and will have to call on the day to see if the bed is still available that means I may not get it every 6 months as I have been doing... So the CHair again it may have to be - need Iloprost treatment....

  • Well done for sticking at the treatment if it does work. The effects can be horrible but it sounds like it's worth it for you.

    I've had Iloprost 8 or 9 times but I struggle to tolerate it so I don't end up getting any benefit from it. The hospital I have gone to will only give it over 6 hours for 5 consecutive days.

    Last time I had it they didn't have the right anti sickness tablet on the Thursday so ended up only getting the lowest dose which meant I couldn't go above that dose on the Friday - very annoying.

    I also have problems getting a canula in, one year I'd had the canula in Monday to Wednesday then needed a new one on thursday but they couldn't find a decent vein so sent me home and told me to come back next year,,,,,

    I hope you have a good day today and a few months with less raynauds symptoms!

  • If you had the Iloprost over a longer period you will tolerate much better ... There are loads of people at my hospital that I have met that have it longer than six hours, I have my canula changed nearly everyday as the vein always blows. The canula team at my hospital are very good and they will get another more experienced person to get the canula in if necessary.... I think that you should speak to your consultant about it - lets face it I wonder how they would feel if they have be in our shoes and have Iloprost for one day!!!!!

  • I also have problems with the canula - come out black and blue - but its a small price to pay for no headaches!

  • Hello, I find all the different regimes for Iloprost very interesting. I have 6 hours as a day case every month. Yes, getting the canula in is often a painful problem, Neither do I tolerate it well and the flow rate does not go above 2ml per hour, which I think is very slow. But I would definitely not want to stay in for 5 days at a time. Is it beneficial? I am not sure, but I am told by my consultant that I need it.

  • 3 - 5 days is the average time ... my rate is 0.9ml per hour over 5 days continuous and find that I still get headaches and sickness !!!!

  • Thanks for all the comments - its so good to know others are experiencing the same things.

    today (day two) was pretty much as bad as the day before however i was armed with my positive attitude, dvds, music and nurses that made me smile so got through it far more easily.

    I to have to go on a slow rate 2ml an hour is my max (the weight protocal) but i often end up going down.

    I think its really weird how different hospitals have different timings, mine is one that says only six hours no matter how slow you go. Because apparently the drug is not allowed to have been mixed for any longer, but clearly it is lol.

    I also find variation between nurses some are more than happy to turn it down to 1.8ml per hour where as others say no it has to go back down to 1.3 because thats what the protocal says.

    I have never herd of doing it once a month (yorky), i wonder why you do that as apposed to the five days?

    Now i am feeling completely fine (except for a really sore arm where the line 'tracked') and am ready for round three tommorow. I have already noticed the swelling in my fingers has decreased so its already worth it.

  • The 6 hours monthly is at least one of the protocols used at Chapel Allerton in Leeds. I was told that regular short doses works just as well as one longer session. Just having this means that I don't have to stay overnight and I sometimes I have the treament just sitting in chair, not ideal. When you have it daily over 5 days do you go home with the cannula in or have a new one every day?

  • I go home with the canula in. They dont want to recanulate me any more than i do. im scared of needles so will do anything to be allowed to use the same one again.

  • He He Protocol - Its what you can tolerate !!!!

  • I have had Iloprost last winter every 6 weeks for 3 days (my choice) for six hours a day on the Day Unit. I can tolerate it better that way I find. If they can't get into my veins they give me a big bowl of hot water for my hands for 20 minutes and replenish with hot water during that time. It works. Now, in the summer I asked for 3 months before I have the next one. They leave it much to me as far as possible because, they say, I know best what I need. They are very good at the Freeman Hospital in Newcastle upon Tyne.

  • Today (Day three) was a piece of cake in comparision to the others.

    We changed one of the anti sickness drugs which made a huge difference - it also made me sleep so i slept through the last two hours of treatment. definatly recamend that approach if you can manage it around the terrible headache.

    Im already noticing the benefits and already its feeling like it has been worth it.

    Do any of you have just primary raynauds?

  • I have secondary Raynauds.

    Best of luck for the next 2 days. Oh to be able to sleep through the whole 6 hours.

  • Its been so good to see everybody elses comments and experiences, thankyou all for replying.

    I have finished day 5 and it was a piece of cake! A far different experience to monday. I stayed on 2ml per hour the whole way through (my maximum), had some extra anti sickness drugs at lunch time and painkillers.

    I did still feel a bit rubbish but the day unit was so quiet (unlike yesterday) i went for my ultimate survival tip and curled up in a ball and went to sleep for the last two hours.

    I feel like a sive with all the holes in my arms from attempted canulas (i think i have nine or ten holes at last count lol).

    small price to pay for three months of having my raynauds under control. I can get back to living my life the way i want to without the constant pain, swelling, tiredness and all the other quirks raynauds brings when its bad.

  • Hi,

    It is good to hear all your comments- I am starting Iloprost in a few weeks for the first time and was worried about the side effects. I'm still worried about all the side effects but it sounds like they are worth coping with.

    Ax

  • Hi folks- this is my first blog. I have read with much interest your blogs about Illoporost, I have Scleroderma with secondary Raynauds and have finished my second 6 hour shift on Illoprost. The central heating has broken (no spare part available) then we had some sort of power failure so no hot drinks either available. This really doesn't help a day that is already difficult. to pass quickly. My query is that I tried to go up to 20 ml today but I really felt ill and as the day progressed I felt sick and very clammy. I went back to 10 ml and felt better but I do wonder can I still get good effect from a lower dose.

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