First day of iloprost

First of all can I thank everybody for replying to my post, sorry I have not replied to you separately. Well the first day of iloprost is over it went well, got the headache and pain in jaw, they slowed the infusion and although the pain didn't get better it didn't get worse., I chose to keep the cannula in because I didn't fancy having another needle tomorrow, so sat here with hand all wrapped up!! The nurses were wonderful, I had lunch and loads of drinks throughout the day. Heres to tomorrow folks.

10 Replies

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  • Hi Fairy56, first day over, it can only get better, headaches go after a while, if you think about it, the whole body is being subjected to something new, so there are bound to be some strange feelings. Stick in there and rest when you need to, it'll be worth it in the end. Good idea keeping cannula in, I did the same thing. Hope you have a good day tomorrow, at least you have good nurses looking after you.

  • Hi there, pleased you done your first day and it didn't go to bad. They should be able to control your headache by turning infusion down. I've have 4 x5 day infusions over 2 years and have to say I always get that weird jaw ache, have no idea why. I also keep cannula in when possible, I did find that after 2nd day it irritated my vain and felt like it was burning,so never managed more than 1 night. Having iloprost has stopped me having finger ulcers again although doesn't stop attacks. Good luck with the rest of your infusion.

  • What is iloprost I've never heard of it I've had scleroderma (systemic) since 2004 just wondering if it would work for me 😃

  • Hi there, Iloprost is a infusion , usually 5 days of 6 hour sessions. It's to help circulation if you have raynauds and help prevent getting ulcers on your fingers X

  • Well done fairy56 I'm glad the day went well, as mew53 said stick in there it is well worth it I know! I found putting a sock on the hand padded the dressing out and made it more comfortable to go to sleep. Have a good night and off again tomorrow😊 Jx

  • I could not tolerate the headache it made me feel so sick as well. They gave me anti sickness tablets and paracetamol and codeine which helped a lot.

    Good luck hope it helps

  • Hello again fairy 56, I'm so pleased the first day wasn't too bad for you & I hope the treatment really helps in the end. Keep us updated with your progress please, we all need to support each other x

  • Hi Fairy 56

    Glad you're coping with Iloprost. I've had several infusions over the years. The first one was 24 hours a day for 5 days and I had few side effects. The second was dreadful. Over 5 days for 5 hours but they insisted on keeping levels high and I was sick each day. Since then I've had 6 hours X 5 days but at a lower rate and much better tolerated. Helpful in reducing ulcers but I still get them. I am now on Sildenafil 3 X day but only take it if I'm feeing cold and having attacks. Hope all goes well with your infusion.

  • I got my first Iloprost drip in November. I didn't get headaches or jaw pain until day 4 which the nurses said was unusual, but then I did empty the bag on both days!

  • Good luck for tomorrow

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