iloprost infusion

[GavinMurphy]

Hi all, just got back from five days treatment of iloprost infusion, 5.1 mg 6 hours p/day and my raynauds is as bad as ever. my consultant told me to see if i notice any improvement over the next couple of weeks, i thought it would have been instant remedy. Anybody else who has been treated with this do you find it to take time to get in your system or is it more instant???

[Rp321]

Dont worry it definatly takes a little while to work for me.

I notice an instant benefit as its dripping in but when its off it goes back. Even when it is working i still have to wrap up extra warm etc, the difference is when i dont have it no amount of wrapping up helps.

how did you find the infusion?

[GavinMurphy]

First couple of days worst with migraine aches and pains, got worse the longer i was on it, the last 5 to 6 hour was the worse but day three onwards new what to excpect so did get easier.

[Anteater]

Hi Gavin, you are very brave to have the infusion at 5.1 mg at least you can get it over with within 6 hours. I have it continuous for 5 days at 0.9 and I still get headaches/migraines/aches and pains .... Did you get your private room hahaha .... maybe not but bed I hope !!!!

It does take a while to work sometimes 2 weeks or more before it kicks in. My fingers have been blue throughout the treatment - but it does help. Skin will start looking better and helps to prevent/heal ulcers if you get them.

And as Kaz Said - dont rely on it completely still need to keep warm and wrap up.

[zenabb]

Iloprost dialates the blood vessels as far as it can considering the state of our blood vessels. In dialating the blood vessels more blood is allowed to flow to the extremeties (and everywhere else, hence headaches). By allowing the blood to flow better it makes us feel a little warmer and it allows the blood to heal ulcers. Also by getting to the extremities the blood prevents to some extent ulcers developing. No miracle, Iloprost does what it can to help us. In the winter I get it every two months for three days (I always book my place at the time before to make sure). In the summer I have it every four to six months. I am tired afterwards but it well worth it in the long run.

[Roamer]

I first had iloprost when I was first diagnosed with scleroderma - the key indicator was a big ulcer on my finger. I had two weeks worth in the end and my ulcer healed. I didn't notice any other effects really....until I needed some more, then I knew that it had been working! No magic cure I'm afraid but it helps for me - shame that the treatment unpleasant.

[annmarie72]

i have had it three times now it worked at first but now does nothink for me i get realy high on the dose upto 50 and doesnt effect me so i guess my body is just used to it and throws it out as sklero does with alot of medication

[Suse57]

I have had diffuse systemic sclerosis, characterised in part by many and persistent digital ulcers, for just over 7 years, and have had Iloprost infusions regularly for nearly six of those years. I can honestly say that I never really felt a benefit from Iloprost during the most savage first few years after onset - my uulcers persisted for 9-12 months, no matter what. However, since my last infusion I am delighted to say that I have noticed an improvement (finally!) and my current ulcers seem to be healing marginally more quickly than they would otherwise (although I have been taking antibiotics as well). Perhaps the aggressive and all-conquering period of the disease has finally passed through my body, and I am now in a state of relative pathological calm that allows me to gain benefit from symtomatic treatments.

Iloprost is not a cure; it is a means of providing temporary vascular dilitation that lasts longer than the length of the infusion. As Zenabb said, it is another weapon in the arsenal that medics have to draw upon, but isn't magic. As for your dosage over the five days, it all depends on your weight - you are presumably a well-built gentleman. I agree with other that the headaches are dreadful, but nothing that 100mg of Tramadol and some cyclozine (sp?) can't deal with for six hours - and good banter among fellow patients helps as well!

Good luck with your Raynaud's treatments. Hopefully you will find one or a combination of drugs that eventually works for you.

[MrsH]

I'm a little surprised at the iloprost infusion technique. I was on inhaled iloprost six times a day for several years with pulmonary hypertension, then turned over into inhaled treprostalin. I've never heard of infused iloprost for Raynaud's alone.