hi

Iloprost

just back from having my first session of iloprost at the Royal Free Hospital where the nurses doctors and all staff in ward a Pitu where amazing. I am hoping that after 5 days fo 6hours that this has worked for me is there anyone else out there who is troubled with raynauds and eyrthromelgia and not life threatning as far as you know who has had iloprost and it has worked for you please let me know I have now learnt there are still some other choices for me but I am really hoping this iloprost is the one as i have heard it lasts for a while well I have to give it up to at least 6 weeks before I know for sure??then hospital check up in 3 months. During my stay there I met some very brave people with ailments from raynauds and scleroderma and lupus and now feel incredibly lucky despite my condition being a total nightmare. due to lack of understanding from lots of people ignorant to this.please in box me if you have above and suffer from menopause too many thanks Britt Long xxxx

10 Replies

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  • Hi I have severe raynauds. I have been having iloprost for 8 years. I used to have it annually for the winter but now I have it every 4 months for 5 days continually on maxim that I can tolerate. How I'd you find the side effects? My BP drops down to the 70s sometimes but as long as I can keep it above 80 systolic then I can carry on but I feel that the side effects have got worst. It does not cure me and my hands and feet are hard work most of the time but it keeps my ulcers away. When I get ulcers I then have to go in and stay on the iloprost for 2 weeks continually which is horrible. I have it at the UCH as the co-ordinate my care and I see the royal free every 6 months for view they do my heart tests.

    Glad you found it ok

    Jaime

  • 6 years having iloprost had raynauds for 8 lol

  • Jaime, is that a nervous laugh? because I don't know anyone that finds any of these conditions amusing! Raynauds at any level can be very miserable,and most of us that have been offered Iloprost suffer excruciatingly. I have quite severe Scleroderma as well (CREST Syndrome generally) and I have had Iloprost in the Winter for the last two years. It helps a bit but the effects are not very lasting. I expect it's different for everyone Britty. Best of luck! x

  • Sorry Jaime I miss read your message! (hadn't realised yours was the above response too) : / x

  • ive been offered iloprost for my em and raynauds but have declined thus far. I havent seen any clinical data that it works when you have both so am v interested to know if any one hs had with success or failure etc so let me know if it has helped you al all

    I have an underlying diagnosis of limited systemic schleroderma which only showed up on ANA test 4 years after EM and raynauds only kicked in 9 months ago. Ive had the worst winter ever swinging from em to raynauds 24 hours a day marginally helped by Lyrica and Cymbalta combination plus huge amounts of morhine. Im switiching over to Oxycontin as soon as I can pick up the prescriotion. This was following an appt at Addenbrookes Camridge...I wont be going back though, no comment!

    I had various discussions with \Chris Denton re my treatment and he didnt have anything else to offer.

    I was a registered nurse for many years which helps when it comes to getting to gris with all the issues etc and how to handle doctors! I should run a master class! Thats what cmoes from running an AandE dept !!!

    my legs are grossly oedematous at the moment from mid calf to mid thigh so having to avoid the heat, normaly Im really good in the summer as I dont get the raynauds

    Iloprost feedback appreciated!

    amanda

  • Hi Amanda Sorry to say Ilprost does little for me. I have been having it for 12 years and I think the more I have the less effective it becomes but hey we're all differen t.

    I am normally much better in the summer too but have really bad ulcers on my ankles which refuse to heal and lots of pain and swelling in my ankles.

    I have heard good things about Viagra but apparently its expensive and we cant all get funding so I think like an old horse I will soon be put out to grass ;)

    Take care of yourself... Suzy x

  • Hi Amanda,

    I was interested in your comment that you have attended Addenbrooks Hospital,Cambridge.I live nearby and have been attending Addenbrooks for a few years due to Fibromyalgia, Rheumatoid Arthritis,Lupus and Raymauds. I don't seem to be getting very far.

    Maureen.

  • Hi Britt

    I have severe Raynaud's with multiple ulcers and swelling of the fingers. Just been in Addenbrooke's for the 5th time this winter for Iloprost! It does heal the ulcers but has no long term effect. They're now trying me on Mycophenolate (immunosuppressent) to see if this will help-just been on it for 10 days. Am off to the States on Wednesday and am a bit worried about going for 3 weeks without a blood test to see how my body's reacting. PS I've always found the staff at Addenbrookes excellent!

  • Hi I thought it was just the royal free hospital that did illoprost . I had a session of 5 days over 6 hours and really hope that it has worked will not know for 6 weeks I am lucky in the fact that I have never had any ulcers but for many years my right big toe nail has Ask your doctor for a blood test and have fun in America the flight would be too long for me as I have higher risk of clots till next time all take care.

  • Glad your iloprost went well - from what i can make out its the royal free that seem to suggest having it and then maybe you can go to your local hospital to have it if they will do it.

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