New question:
I work in a supermarket, when having the Iloprost infusion, will I be ok to work straight after, as not to sure my company will be to pleased with me taking time off, and how often do you have your infusions, over the course of say, a year, thanks peeps x
That is quite a difficult question to answer because we all react differently to it. I personally wouldn't be able to work after it, the infusion is 6 hours per day and I tend to be very tired afterwards. I'm able to drive myself home and go for a walk and carry on with family life but not much else.
The intervals for everyone seem very different for everyone. Your Dr will decide how frequently you need it.
It might be worth telling your employer about your infusions,everyone is entitled to some sick leave
Hi
Good luck with Illoprost. Your employer should be understanding if you explain things. Sick leave is an important issue and as an employee you are surely entitled to it.
Take care . Lynn x
I had my first one in February and then November , during both I was extremely exhausted , after each 6 hour treatment I was going home to bed , and I had slept nearly all day. During my first treatment doc signed me off so I had something to give my employer.
Hi Anne1966 yes I agree with other comments it's a great treatment but will leave you feeling tired and a little out of sorts for a bit. We all seem to get 'iloprost brain' whilst on the treatment and I wouldn't plan to drive straight after . I usually feel that I pick up after a few days but tiredness is an issue for me for a good week or so and you may find you are susceptible to colds and coughs so keep taking the vits and get some fresh air. The benefits far outweigh the side effects for me so good luck and hope it goes well. Timing in between will be down to your consultant team as we are all so different but I have found everyone at the Royal Free to be amazingly helpful and open to suggestions and you will learn an enormous amount through sharing info with your fellow patients. It's made a massive difference for me as these rare diseases can be a little isolating and hard to understand for people around us. Best of luck.
Linda
Hi Anne,
The infusion is no problem so nothing to worry about. The timing depends on how
your body reacts to it. The nurse will monitor you blood pressure O2 saturation etc.
and adjust the flow rate to suit you so it is possible you could be in for a while (a week) the best I've done is three days and I had to push them to keep the flow rate up. It can make one a little dizzy but it soon goes once the rate is cut down a little. It's not horrid.
The norm for infusions would be, don't quote me as it does vary form patient to patient. Approximately once every three months so four a year.
Once you are signed out you will want to rest for a day so don't plan on going back to work too fast. You will fall over! Get your consultant to sign you off work. Your health must take a front seat on this. It is illegal for your company to sanction you so don't take any nonsense from them!!
The worst thing about the whole issue is pure boredom. Take a laptop and plenty of dvd's. Books, radio, knitting, airfix kits. Anything to keep you going crazy. Apart from that you have nothing to worry about.
Good luck with it.
Regards. Mark.
So, got my date for infusion, & when my consultant said "3 hours for 6 days" what he actually meant was "6 hours for 5 days" 😯 Oh well, just hope it helps, will keep you all posted. Thanks for the support & advice peeps, it's appreciated x
I've Only had one iloprost infusion every consultant is different mine was 12 hours a day for 5 days so I spent a good week in hospital , My BP was badly affected , ( my body hates any form of Medication ! ) and dropped to 80/55 , wasn't allowed to move and made to lay on my left side all through the infusions .
ILOPROST
Iloprost
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iloprost for scleroderma 
First iloprost infusion
