I am due to have Iloprost for the first time

I am due to have Iloprost for the first time

Hi all I am due to have illoprost shortly. I have very bad raynauld which has lead to terrible ulcerated fingers. They are extremely painful and I have not been sleeping. They pain then burn then itch it's terrible. I have had the option to either be hospitalized or go in daily and I am not too sure which option to go for. For day release do you sit for the infusion or are there beds? I do have someone to look after me if I decide on day release

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  • Hi there,

    That really does look awfully painful, I've been there and know how debilitating that pain is.

    Now, I've never had the iloprost infusions as my veins aren't strong enough to cope apparently (i have to have femoral stabs to just draw blood as my veins are no longer attainable). I've got a friend who's had them, and although at the time of the infusion she said it was ok, afterwards there was dizzy spells that frightened her. I'd definitely opt to stay in hospital if it were me, as then any complications can be dealt with immediately. I guess it depends on what they advise also, as even though you've a choice speaking to a ward doctor/specialist should tell you what they think is best.

    All the best,

    Charlie.

  • I only had to stay at the hospital as an in patient when I was very bad and had iloprost and antibiotics. part from that one time I've had a lot of Iloprost as a day patient. Sometimes I had to sit in an armchair and other times when a bed and an armchair were available it was more comfortable. If I had a headache I would tell the nurse and was given paracetamol.

  • That looks so painful. I hope the iloprost will help you and relive your pain and discomfort. x

  • I have Iloprost infusions, I go as a day patient as I like to come home to my own bed!! Whilst being infused I get bad headaches, and sometimes I feel slight nausea, but once unplugged at the end of the day you soon will feel normal again. (Whatever normal is) lol. Whilst being infused you obs are taken every half hour, and the nursing staff certainly make sure at all times that you are as comfortable as possible. The strength of the drug is increased accordingly to what you can tolerate. Good Luck Jx

  • Hi There thanks for the information

  • Hi

    I've had Iloprost a couple of times for the same problem. Last 2 times I was a day patient and sat in a very comfortable chair for 6 hours each day over 5 days. Was able to keep the cannula in for 48 hours they just covered it for me to go home. I drove there and back because within few minutes of stopping the infusions the side effects (headaches and some nausea) were gone. They were very good and I only had the amount I could tolerate.

    The first time I had it 24 hours a day for 5 days and didn't get any side effects. I was an in patient then and the second time I was an inpatient also. It seems to have worked well last time as I've had less ulcers. I'm also taking sildenafyl. Hope it goes well for you.

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