Worried about iloprost

[Choc73]

Hi I go into hospital for 5 days of treatment on the 27 Feb for the first time and I am very anxious about the process. I've had little info from the hospital.

Any tips or information would be greatly received.

[Joan59]

good luck with your treatment. All I say is drink plenty of water whilst on the infusions because they can give you a headache and I would also ask for cover of pain relief and an anti sickness pill just incase you need them some people do some don’t. Hope this helps.

[Choc73 in reply to Joan59]

Hi thank you for replying and for the tips. Most definitely helps as I have no idea what to expect. From reading the posts most people suffer side effects ☹️ Most of the posts are also very old.

[Deby177]

Seriously all individuals 🙄 I was ok no big effects, take magazine, download few movies, radio etc pass day its long and sore on bum sitting so long I even took blanket keep me cozy, dress for comfort. Lots of drinks wee packed of hard sulky sweets, I struggled possibly more week after I was exhausted, reduced my aches in body for 2 months but my main reason for treatment was raynauds but has made no difference at all. Good luck

[OldTed60]

I have them every 3 months only longer stretch of 7 hours over 3 days rather than shorter over 5 days. Been getting them for 2 and half years now. They help with general pain and first few times improved pain in my finger tips so I can work and type again but now not so sure as Raynaud’s pretty bad but never had ulcers so maybe Iloprost is why? I do get severe headaches and nausea but I have Gastroparesis so doesn’t help. I get IV Cyclizine and codeine plus paracetamol before they start running it if they listen and aren’t in too much of a rush.

I do get horrible headaches and flush in the afternoons but am used to this now. It stops as soon as the infusion stops. Best of luck and yes drink a lot - first time see if you can tolerate the increase and if not keep it running at lower dose. My body had adapted to it now. Hopefully yours will too!

[Choc73]

Thank you all for your comments and advice - much appreciated. I'm still very anxious!

[Verily in reply to Choc73]

Hi there, my advise is take mints to suck as this relieves any pain in the jaw plus lay down on the bed as this helps with pains in legs and take paracetamol just before you get there and every four hours. You can ask the nurses to reduce the dose try not to overdo the dose as it is up to you. All will

[Choc73 in reply to Verily]

Thank you. All these tips are so useful.

[trunchalobesity]

good luck I go in for a week of flolan.

It’s all ok

They check blood pressure regularly for any change so you will be well monitored.

My main advice is take books, magazines or puzzles. They are long days. Also you are on the unit.

They usually offer a drink etc but not enough for me. I take a flask, milk, and my own lunch.

I use a mask for eye cover to try and get some sleep.

Please don’t worry x

[Choc73]

I shall be taking lots of food & drinking lots as I faint if I don't eat & drink regularly. I'm assuming it's best to have someone drop you off & collect you in case you feel ill. I'm a very active person so I know I'm going to find it extremely hard.

[1Stella]

Hi - I’ve been having yearly Iloprost infusions for 10 years now for Raynauds due to Scleroderma. I would definitely recommend taking the paracetamol and codeine offered before the infusion starts and also anti sickness meds as I think it’s better to keep ahead of the side effects rather than wait till they become a problem.

I have IV Ondansetron (anti sickness) before the infusion starts and then top up with Cyclizine when I next can have more meds. I find the first few days the worst and it’s usually much better by Thursday & Friday. Just think I’m quite sensitive to drugs as some people sail through absolutely fine. Take snacks in in case you don’t fancy eating at lunchtime and drink lots too. I go to the Royal Free and the staff are wonderful. Just tell them how you’re feeling

I know it’s hard but try not to be anxious - I still get like that every year so I understand. A group of us who all have iloprost every year book the same week so we can support one another and have a catch up!

Take care and wishing you all the best x

[Choc73]

Thank you so much Stella. Lots of really useful info which I need, I still can't believe I've not had info from the hospital about what to expect. I will definitely take up the offer the meds before it starts, anything to help the process. I shall brace myself for the first few days! Your lucky to have a group of you going through the same thing. Thanks again for replying. Do they leave the cannula in? Rather than taking it in and out?

I hope I don't feel bad the weeks following, I shall be wanting to get back to my running!

Take care.

[LilyInTheSun in reply to Choc73]

I didn't actually get any info from the hospital about what to expect - just the standard appointment letter with the date, time and place. If you have any specific questions not answered here, you might be best to given them a call.

I didn't have any side effects after I finished treatment - possibly slightly warmer for a couple of days and a bit tired (although that's normal for me!), but that's it. Even when I felt nauseous at the end of the first day, this passed within an hour of the infusion being disconnected. Lots of other people also say that side effects stopped for them as soon as the infusion stopped. So you should be fine the next week.

The other thing to bear in mind is that if you do get any side effects, it doesn't mean you'll have them all week while getting the infusion. When I felt nauseous on the first day, I was dreading the rest of the week, but I didn't get any side effects on the other days.

Take care.

[Chicunique27 Administrator Volunteer]

Hi, I have iloprost every 6 months and I found that it helps with the Raynaud’s and skin. I have been having iloprost for about 6 year's and have seen an improvement with circulation. I would also say that you should eat and drink plenty of water during treatment. Try not to be anxious remember that it's a treatment to help you with your health and help manage the condition. You can keep the cannula in but that is your choice. It's best to see on a day to day basis then decide. You shouldn't feel to worn out I would suggest to rest and relax after. Wish you all the best with treatment hope it is a pleasant experience for you.Best wishes,

[Choc73]

Thank you That's all reassuring.

[LilyInTheSun]

I had my first iloprost infusion last May, and just waiting for my next appointment now. I went to the Royal Free in London. Is that where you're going? I was really nervous about going (you might have seen my post from last year asking questions!), especially as I was staying up there for the few days (as I don't live locally), but it was all fine and I'm not worried about having to have it again.

Here are some things you might want to know based on my experience:

- They had really good people for fitting cannulas. I have very difficult veins and in the end they had to get the vascular access team to fit my cannula - they have special scanners that allow them to identify good veins that are a bit deeper. Once the cannula was in, it wasn't uncomfortable. I was able to keep my cannula in over night (just wrapped up), so it lasted two days each time. After two days it got a bit itchy so they would replace it.

- Because it was my first time having iloprost, the nurses were extra attentive. They gave me anti-sickness tablet and pain tablets before they started each day, so do ask about these if they aren't offered.

- They start the iloprost on a low rate of infusion, and then increase it gradually over a few hours, so they can see how well you tolerate it. If you start getting side effects, like a headache or nausea, they can decrease the rate again to a rate that you can tolerate well. So let them know if you have any side effects. You don't have to sit there feeling ill.

- The nurses will monitor you regularly (blood pressure, temperature, etc.), especially at the start, and will keep checking in with you on how you are feeling. You aren't hooked up and then left to it!

- Some people get on really well with it, so you won't necessarily have any side effects. I had a headache the first afternoon, and then felt a bit nauseous for the last hour or so of that day, but was fine all the other days. In fact, after a couple of days I felt warm for the first time in ages, so really enjoyed that!

- Lunch, hot drinks and jugs of water were provided at the unit I went to, although I didn't know that until I got there. Food was a bit more tricky for me because of food intolerances, but they could usually find a sandwich I could have. I took some snacks too. At the Royal Free, there's also a WH Smiths shop and an M&S cafe downstairs, so you could also go and get something from there (you can walk around with your drip attached to a wheeled stand).

- Wear something comfy with layers that are easy for having a cannula fitted. Layers also help if you find the unit too hot or cold.

- The unit at the Royal Free has reclining armchairs with foot rests, which were really comfy, so you could put your feet up and have a nap if you wanted to.

- Take some things to keep you entertained or distract you, like a book, magazines, podcasts, a movie on an iPad, etc. But I found the days went more quickly than I expected because the nurses were doing checks so regularly and I also had visits from doctors while I was there.

- The nurses were really lovely - very kind and supportive. I found that really reassuring.

- In terms of whether you have someone pick you up, it might be helpful if you have a way to travel afterwards, in case you feel a bit nauseous. I stayed in patient accommodation next to the hospital, so just went back there after each day. But on the last day I travelled home afterwards, which involved getting the tube and then a train - it was tiring, but fine otherwise.

Generally, it was a lot better than I was expecting, and I'm not too worried about having to go again. I hope your treatment goes really well. If you have any other questions, just ask!

Take care! 😊

[cowhide in reply to LilyInTheSun]

what a great and detailed answer. I had iloprost at Leicester General a few years ago for Raynauds secondary to scleroderma. Was fed and watered, very well looked after, also visited the shop between blood pressure checks (not on first day). Felt a bit of a fraud taking my drip with me!

Took an iPad and book, had some snoozes, chatted to others on the ward and the nurses. They recommended taking the anti-sickness pill every day, which I did. Dose increased every day ( your maximum dose is calibrated to your body weight).

I had no side effects and after the first day, drove both ways and (I am a farmer) worked outside each evening for a couple of hours after I got home, the only problem after a couple of days was my cannula was a bit sore because of carrying buckets etc, so they then changed it.

I was able to go to my maximum dose ( they said this rarely happens).

Did it work? I had a ‘warm glow’ for a week or so afterwards, but not really much longer so I didn’t repeat it.

Everyone’s experience is different but I would definitely try it again if my rheumy thought it might help more in the future.

[Choc73]

Wow you guys have been amazing in replying and providing so much information. I honestly can't thank you all enough.

It has really helped me process what the five days could be like.

I am having my treatment at Musgrove Hospital in Taunton, Somerset.

😊Thank you all so very much. Fingers crossed it works for me. I can't stand the pain much longer.

[hunkyd0ry]

Hello Choc73. I hope you are doing well and treatment goes well for you.

The treatment itself isn't too pleasant. But the dose goes up slowly and they keep checking on you and won't go any higher unless you are okay with it.

I've experienced nausea, headaches, toothaches... once I just slept and slept... another time I was very restless. The good thing is that once you off the drip the bad side effects go away pretty much immediately!

And you will feel a definite improvement afterwards that will last you about 3 months! So its all worthwhile! Good luck!

[Choc73 in reply to hunkyd0ry]

I’m on day 3 & struggling with feeling side effects & cannula issues.

Yours only lasts 3 months 😳😳😳

[hunkyd0ry]

Unless you are in for some more potent stuff than they gave me? What did they tell you how much time you will benefit from this?

[Choc73 in reply to hunkyd0ry]

I’m totally new to this & wasn't given much info. As it’s an annual process I assume I’d benefit for longer than a few months not that I’ve noticed any improvement as yet.

[hunkyd0ry in reply to Choc73]

I am aware of 3 months and that some people are in hospital for the infusions 4 times per year to get them through it.

Considering you are there for several days, hooked up to infusions I find it hard to believe you don't know more / have been given more information. Surely a rheumatologist should be scheduled to come and see you and discuss everything with you in detail (during your stay, but I would have though before the treatment too?!)

Ask, ask, ask! This is all about YOU and your health after all!

With regards to improvements... give it some time to really land.

For me it was situations where I was standing in my allotment chatting to a friend and I suddenly realize that I am the one standing there in a t-shirt while she is in a jumper and mentions the cold. This was a REALLY unusual and unprecedented situation for ME!

And yes... my fingers improved a lot too!