First iloprost infusion

[ctj_2013]

Hello,

I have Raynauds and a tentative diagnosis of limited cutaneous systemic sclerosis. I could not tolerate nifedipine; I can tolerate losartan potassium but it does not seem to offer any symptom relief. My rheumatologist has now arranged for me to have iloprost.

I am having my first iloprost infusion next month (every day for five days at a Medical Day Unit). I have taken the week off work + the weekend to recover.

I am nervous about the treatment but trying to stay positive.

If anyone has any advice or tips, I'd be glad to hear them.

Thanks.

[Bronagh2015]

Hi, I have had these many times, make sure the nurses give you painkillers and anti-sickness tablets before you start. I also find if you keep eating small amounts often it helps, take some plain biscuits with you and drink plenty of water. It seems to make your eyes more sensitive to light so our nurses always turn down the ward lights for us, don't be afraid to ask if this happens you. I find it really does help my Raynauds I call it my 'antifreeze ' treatment. Wishing you good luck.

[Hidden]

I have Iloprost infusions every 3 months for my Raynauds. I'm on the drip for 72 hours solid (except to dress and undress) and it does seem to work.

Watch out for nausea, a cracking headache and an aversion to light while you are on the drip - think of a bad hangover as that's the closest I can describe it!! Once the drip is out it takes me a couple of days to get back to normal but some people feel absolutely fine straight away.

Nifedipine etc have no effect and the Raynauds and chilblains are so bad this is my only way of getting any relief but it does work. It usually lasts me 8 to 12 weeks hence having it every 3 months. Good luck and take your sunglasses!!!

[zenabb]

I had Iloprost for many many years. It is not pleasant except socially talking to similar patients. The healing effect is not immediate but in the long run it is very helpful. Best wishes.

[GlasgowHen]

I have iloprost every 4 weeks for 3 days. It really has made a huge difference to my pain levels,chillblains and General comfort. The infusions are not exactly comfortable. I get admitted to a ward but can go home with the cannula if I feel well enough which I always have done. It does cause headaches and nausea while it is infusing but quickly goes with a rate reduction.

Hope it works as well for you, I still get chillblains and presently have very deep cracks in some finger tips but I hate to think what my fingers and toes would be like without it. My regime made sure I had a comfortable ish winter for a change

[ctj_2013]

Thank-you everyone I will take your good advice and let you know how it goes. (Sunglasses packed)

[ctj_2013]

Thank-you everyone for your previous advice.

I tolerated the iloprost well but have not noticed an improvement yet (5 weeks post treatment).

Unfortunately, over the past few weeks my left index finger has been worse than usual (incredibly sore and throbbing) despite all the usual precautions (gloves, wrist warmers, etc) and has started to bend inwards which is a new symptom for me. I 'phoned the hospital and spoke to the rheumatology nurse who arranged to bring my 3 monthly rheumatology review forward from the end of October to end of August.

This is frustrating but I'm keeping positive ahead of my appointment. Onwards and upwards