Going for iloprost infusion next week for five days i was wondering how much time, if any i would need to take off work. I do plumbing and heating and work with my hands. also do they treat you on the ward or do you get the luxury of a private room?
Thanks again in advance for your kind responce.
Gavin
Responce should read Response, i do apologize for my poor grammar ; - )))
Hi
People tolerate the infusions differently. I didn't take any time off work following treatment, although I was very tired first day back ( I've had 2 courses now). I have my treatment on the ward with other people having the same treatment so at least you have people who are in similar circumstances as yourself. A good way too to get tips / advice.
Hope it goes well for you.
Gavin you are funny, Private room, you have got to be joking !!!! When I worked my GP used to give me two weeks off as I was very tired afterwards - however, as Sandra mentioned everyone tolerates it differently. I presume its your first time on Iloprost! You usually have it over 6 hours and is measured according to your weight. I have been having Iloprost for 6 years now every 6 months - but now I have it continuous over 5 days (24 hours a day) at a rate of 0.9 mls per hour as I suffer from severe migraines.
If you feel that you canno tolerate the measure they are giving you ask them to put it on a slower rate.
Good luck .....
I go back to work on the monday. I do feel fragile after but i always want to get back to my life and the normality of work. I usually just let my work friends know
that if at all possible to have a quieter first few days back.
I go to a day unit, which is often really busy (none of which having the same treatment as me), the nurses have this trolly which makes so much noise when they wheel it so not good when you have a headache! so side room from my experience, no chance! queit area maybe you will be lucky.
Depending on where they put the needle and if it 'tracks' the site of the needle might be a bit sore. If they give you the choice ask for it in your arm (just slightly up from the wrist), then if you get a sore spot it wont effect your ability to use your hands. It may just be me that gets that because i havent ever seen anyone else writing about getting sore spots from the needles after.
Hope that helps, and i hope it all goes well for you.
Private room, you are joking. I don't even get a Bed, just sit in a large chair, which can be tilited back, but then I only have it for 6 hours. I usually find 2.5 mls per hour is plently fast enough, the headache/sickness only just tolerable. Ask to be prescibed paracetamol for the headache (although it is not really powerful enough, but might just take the edge of it ) and cyclazine for the sickness. I am usually almost recovered after about an hour after they have stopped it, although I do feel tired for the evening, but that is probably stress from being in hospital and the 7 attemps to get a cannula into my vein. If they have trouble with your veins get your hands/arms into warm water. Best of luck.
I go in for 3 days and have iloprost continuously at 1ml per hour. I am on a rheumatology ward - some other iloprost infusions going on. I feel fine afterwards - just carry on as normal.
I get weighed before the Iloprost. The amount they give me is according to my weight. If I get a headache I ask for paracetamol. I go to the hospital on a daily basis and sit in an armchair. I prefer to have one with a foot rest, if they haven't got one I ask for a separate foot rest. I take a book to read. An hour after I have left the hospital I am tired. I did not take other time off when I was working. I am retired now. I have had Iloprost for years. Recently I asked them to reduce it to 3 days and have it more frequently. I book my next Iloprost session before I leave the day ward. It is not a good idea to leave it to them to remember to recall you. Good luck.
Hi. the treatment is for about six hours aday after that you do nothing, Good luck in your treatment.
david
I go on a daycase ward for 6 hours a day for a week. Just get a chair. To be honest it's much better to be with other people for the banter - it's a really long week, so the more distractions and laughs the better. I work on my laptop when hooked up on the drip, but have to go straight to bed for an hour when I get back home as it makes me really tired. I'm back at work full time the next week, more fragile than usual but glad of the normality.
On my ward, they start you on a low dose and then you decide whether you want more or not - best to get as much in as you can tolerate. The good thing is that shortly after they unplumb me any side effects disappear.
Hope that your treatment goes well.
Hi Gavin
I have been having infusions for years, currently I have them every 3months for 72 hours non stop. I have just moved to the Midlands and chose to got to the Queens Medical Centre Nottingham. They wanted me to do the 5 day treatment ( they prefer you to do this to save you getting infections ) but that did not work as my veins are so poor, so I now stay in and have a line put in for the 3 days treatment. (my last comment re infection came true as I tested for MRSA after first stay!) This said this hosp is excellent. They talked about Illoprost and had this been the only treatment I fear I may have refused. I have a drug similar now which is called Flolan and much more tolerable, still get a headache but that's all. Hope this helps. I do not work any more but when I did I always went straight back to work, just tired a couple of days and I could always feel the benefit of the treatment several weeks in.
Try and get as much info as to what is going on so you feel in control.
Good luck
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