Iloprost

[Jacko37]

Hi, has anyone had Iloprost in the summer and did it help with the burning?

[Feelingpants]

I have iloprost once a year normally anytime from September I have it for 5 consecutive days.it is rough going iloprost is toxic it can make u light sensitive so I'm always told to take sunglasses with me as it can also cause severe headaches.But on the plus side it does relive my symptoms of painful Raynaud's in my hands & feet which is bad mine can get triggered just by going in a different room where the temperature may b slightly different.going in the fridge,going down the freezer Isle at the supermarket,even in the bath ! It does relive my burning and colourization of my hands & feet. It does make me feel really rough for a couple of days but it's worth it to me to go through that .Sending gentle hugs 🤗💐

[Aarts in reply to Feelingpants]

I'm getting it next week for the first time. Would you say the headaches and light sensitivity are temporary side effects and thereafter you feel ok?

[Feelingpants in reply to Aarts]

Yep they wear off its because the iloprost opens all your arteries.mine normally goes after a couple of days .the light sensitive & headache will only b temporary & mayb won't effect you at all ! If your Raynaud's is troublesome it really is worth the headache & light sensitivity.i just get the headache & feeling slightly rough but in all honesty I feel rough most days .I have mixed connective tissue.and also intestinal faliure I'm fed through my chest by TPN 5 days a week 12 hours a dayMy disease MCTD causes and has caused many problems with regards to my health 😔😔😔😔😔😔😔😔😔😔

[Aarts in reply to Feelingpants]

I hope for better days ahead. Xx thank you

[Feelingpants in reply to Aarts]

Many thanks 💐 & you will be fine 🤗You've got this 👊💪

💐💐💐💐💐💐💐

[Jacko37 in reply to Feelingpants]

I usually have it once a year, but they are ralking about having it within the next few weeks, never had it in the summer before. Side effects are pretty bad during the infusion but they soon ware off, think the worse part is trying to get the canular in

[Feelingpants in reply to Jacko37]

🤣 Definitely 😱😱😱😱

[Lupiknits]

I have Iloprost every month. It can make you nauseous, so, for me, they start with something that prevents that. Otherwise a headache and feeling tired on the day are the my side effects for me. If the ward is bright, they are quick to ensure the blinds are down or a curtain pulled. Apparently they have disposable eye masks available too.

It’s worth it!

[Jacko37 in reply to Lupiknits]

Every month, poor thing! Is it just for one day or it for 5 days in a row? I moan with just once a year, they keep asking me to have it more often but I keep getting cold feet and turning it down, Xx

[Lupiknits in reply to Jacko37]

It’s just one day! Yesterday was, of course, extremely hot, and it felt a bit daft lol.I used to have Iloprost every three months, but three days in a row. One day a month is more bearable.

[Jacko37 in reply to Lupiknits]

I wish I could do the one day thing, even if it was once a month. I find the 5 days in a row really hard going, probably the main reason that I only have it when the ulcers start getting out of hand.

[Lupiknits in reply to Jacko37]

Oh, my sympathies! I hated the three days in a row so much. While everyone on the ward is very kind and professional, I just hated it. I’m now once a month because over the winter I developed very bad digital ulcers. I’m not the best at recognising things are wrong and just carried on without letting anyone know.

[Jacko37 in reply to Lupiknits]

Exactly the same. Last year I got myself in such a state and ended up with 14 ulcers on just 2 fingers, ever finger and both thumbs had at least 2 ulcers. Some opened up and just wouldn't heal. Some fingers are still sore even though the ulcers have now healed. Even had them up my nose. Kept telling myself that the would get better by themselves which of course they never will. Might ask about the one day a month when I get a chance and before next winter.

[Lupiknits in reply to Jacko37]

Please do! I am a very bad example to follow when it comes to noticing something isn’t right.A breezy day in summer get me. I get my shopping online and delivered, which is particularly useful in air conditioned shops. Embarrassing to be in winter gear when everyone else is in summer stuff

[OldTed60]

Hi I have Iloprost every 3 months so later this month is my next lot. I started having it during a heat wave on a very hot, sunny ward in June 2020 and it was horrendous! However at the end of the first day I could type and touch things without pain and all tiny blisters on my finger tips vanished overnight. It’s as if it reboots my thermostat.

But these days my Raynaud’s is rather worse as I have severe GI issues and have lost much weight so even in summer I have a few prolonged attacks most days.

The worst thing for me is that I also got IViG inpatient 3 weeks ago and my veins are so wrecked I can’t see how they will get in this time but they are very experienced all hopefully somehow they will. I have IV Cyclizine and get codeine as a pre-med which really helps. Good luck!

[Jacko37 in reply to OldTed60]

Yes, they are really good at getting those veins. Mine are awful and getting worse but they have never failed. It's crazy how you can turn blue on a really hot summer's day! Good luck with your infusion,

[avtargill31]

I have it once a month to save my finger tips. One thing that hasn't been mentioned is the jaw. Come lunch time, if you bite into a sandwich, the jaw joint will feel very painful, that will pass as the infusion completes. My last one was yesterday. i am constantly hot, even in winter. I now have a PICC line fitted as the hospital struggled to cannulate me due to veins collapsing and the scleroderma making it hard to get the vain too.

[Jacko37 in reply to avtargill31]

Could never understand the jaw thing, gets me every time, brings tears to your eyes. Dreading all this heat over the next few days, not nice for anyone but when your internal thermostat just doesn't work there's no chance.

[avtargill31 in reply to Jacko37]

Completely agree. Fans are ready as it will be boiling

[Verily in reply to avtargill31]

Hi there, just wanted to say if you suck on mints or any hard boiled sweet it eases the headaches and pain in the jaw, this is because you are keeping your muscles working, hope this helps you next time xx

[Jacko37 in reply to Verily]

Good idea, thanks. I find the first bite of anything is the worse, agony!