Scleroderma & Raynaud's UK (SRUK)
6,787 members3,211 posts


Hi Guys/Dolls. I was on here a few weeks seeking help like many off you. but now I have been kicked where it hurts by a consultant whom promise to help me. After having treatment before Christmas for raynauds, not that I have been told I have it, I undertook 10 days of treatment called illoprost, at 5.0 for six hours aday. for ten days. Also was give an overdose rate of 8.50 over six hours which was classed as over dose, but two nurses whom didn't know how to do the treatment. So putting me at risk took no notice of me while having bad headaches, heart rate going up, and much more. Well after all this so called treatment it has failed, my right foot is swelling each day going a dark blue, and no painkillers will touch it, I'm a walking time bomb ready to blow. For all the pain I have now I rather be dead than put my family through more of this heart ached that I have. The hospital has given on me, what a joke no reviews.

4 Replies

iLOPROST dialates all the blood vessels including in your head, that's why you get headaches and that is also why you have it in hospital and in case your blood pressure drops too far. You should get paracetamol for the headaches. You seem to have received an emergency amount of ILOPROST so you must have been in a bad way. Are you diabetic? Or you may need to see a specialist for arteries and veins (the name escapes me just now). DON'T GIVE UP and don't feel so angry. You need to be given much more explaination to understand what is going on and what they mean to do about it. You have the right. Go and see your GP but not angrily - even if you are.


Hi their. Yes I was give a dose of Ilorost should been five . twenty per hour by Drip. undertil about the 9th day two nures stater their shifts and they was told what to do regards my treatment, god knows these two got through their training becuse this morning they gave me 8.40 mgs in fluid. for a while things as going ok then the headacrhes startered and that was it, as I new nothing about the day, after being woked up the staff on duty at a later time found that I had been Over Dose. Well I wasn't to happy about is. So seeing my notes beside me, and what had been wrote, I got my phone camerma and took photos os what was put. So I have proof in whats been said. Should I ever make a claim againt. As for trusting te hospital that a joke. Their is nothing wrong with my arteries nor and I aa Diabetic, and they never gave me any paracetamol, they left me in waking up on my own, But I also had to used a disabledd toilet that was along the main corried as they don't have disabled bar in the wards, anyway getting the toilet and undressing myself, hold two bars one on the was upright and the 2nd one behind me, well their was no problem on finishing my busines I pulled myself up and pushed self up with right hand as doing so the saftley bar on the wall came away with two bolts shooting out of the wall me I fell to the fall falling on my stump of left leg and havening a wheelchair in front of me broke part of my fall my still hurt myseft, but also I land away from the alarm cord, and wasn't abled to reach for some time. I was cold and couldn#t move but I shouted for and one heard me. Well after awhile I was able to get to open the door and push my wheelchair out and shouted help did I then get it, many said That I shouldn't of left my bed so soon after teatment, but the staff nurse knew where I was going and never try to stop me and I needed the toilet. Now you should understand that piteints saftly comes first and after that fall, the staff wasn't all that helpfull towards me, did'nt check my stump to my bad leg no x-rays not a thing, to this very day I haven't been abled to wear my falsh leg due to pain and swelling. So now I have very little faith in Frimey Park Hospital they don't care about you at all. And my trust towards then are NIL. Total let down.


Do you have Scleroderma? Perhaps you need to be seen by a specialist. Join this site if you have i find them VERY helpful


Hi - if you are in the UK get a referral to see Prof Denton at the Royal Free hospital in London. What he does not know about this condition is not worth knowing as well as he and his team, actually care about his patients !

His support has helped me through the last 15 years of this nightmare health challenge. He also supported me to achieve my dream of becoming a practising barrister, but who was I kidding.. after a few years of working as a hamster in a manic wheel the scleroderma + immunosuppressants combo put me on my back and I am still regaining my strength and getting better each day having returned to my home town and am no longer able to be on the manic wheel !

I have posted a comment on your other post about the marvellous experience which I have had with Pawpaw lotion and I really think you have got to give it a try ! as for Iloprost - I have nothing good to say about it ! other than I was the first day patient at my local hospital to ever have had it and so i was their guinea pig ! and now it is a regular treatment at the hospital, so hopefully it helps some people ! as for me - no way will i ever have that stuff again ! I agree with you re the side effects - the headaches were so bad I was actually praying to die.. i dont want to be morose, Im just being honest... i have been through some very trying times with this journey and never have I felt like that other than with Iloprost so thats why I have made a promise to myself that I am not having that ever again. I accept, though, I am house bound during the winter as well as having to wear Ugg boots and thinsulate gloves all year round ! im currently on my second 6 month regime of Bosentan which is working well - a few side effects of nose bleeding and loss of appetite etc but nothing as bad as the Iloprost. And of course Im using the pawpaw lotion after I have bathed in oilatum.

I hope this helps you and that you feel a bit better :)


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