First iloprost infusion: Hi I’m due to... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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First iloprost infusion

Bee1011
Bee1011

Hi

I’m due to have my first treatment on the 28th Oct at Chapel Allerton Hospital in Leeds. My consultant has requested I have one 6 hr treatment a month which seems odd as reading posts on here everyone seems to have 3 -5 consecutive days.

I’m also worried about not being able to nap as I can’t function and start to feel really poorly as suffer from terrible fatigue. The guy who booked me in was lovely and said they may be able to get me a bed, has anyone known this to happen ? Reading post it seems that you are just sat in a chair all day. Is this a comfy chair you could lay back and nap in ?

I am really anxious about going for this treatment so I’d appreciate anyone’s input. 💕

16 Replies
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Hello there, sorry to hear that you are really anxious. Is there a way that you can have a chat with your Consultant, or do they have a Help/Advice Line where you can ask advice from one of the specialist nurses in the unit. They can then talk you through what will happen. Each unit will have slightly different ways of operating but generally you would have your treatment over the course of about five days. Approximately 6hours a day. I am not sure what his clinical rational for this very slow approach would be, but maybe it is something tried and tested on the unit.

Regarding the resting, or napping. Some units do have beds for patients but most have recliner armchairs that are big comfy chairs that you can recline to the sleeping position. Depending on you, you may find that you will be able to have little naps throughout the time you are hooked up to the IV. They generally do your observations hourly, to check your blood pressure, pulse etc, so you can't really drift off for hours without being disturbed. Also the units are usually busy so there is quite a few comings and goings and drips beeping, and general commotion. Many people take headphones in and listen to their Iphone/Ipad. Rather than spending the day scrolling through 'stuff' it can be a great idea to line up some restful podcasts, audio books or relaxation techniques for you to enjoy throughout the day. If you have craft activities that don't take up much space then that is a good way to pass the time. They might be happy for you to take in a blanket or cushion, or hot water bottle, or anything that you want to make you feel comfy and safe. There may be more restrictions at the moment due to Covid.

Just have a think about what would help you.

Some people have no problems with these infusions and some people feel dreadful It can be common to get headaches but they can treat that with pain relief. You may feel more fatigued from having the treatment and need more rest afterwards. It is a little bit difficult to know how you will react until they start it. Normally these things can build or settle over the course of the weeks treatment, but with this one day a month approach it will probably not have too much impact. You only have to tolerate one day, compared to five in a go.

Hope it all goes well

All my best

Lucy xx

Thank you so much for your reply Lucy. I have been browsing this site for over a year now but rarely pluck up the courage to write anything, god knows why as everyone seems so lovely.

I have Antisynthetase Syndrome, I suffer from fatigue and general aches & pains like being run over by a bus daily. My raynauds is also pretty bad, I get painful cracks on fingertips which get swollen and inflamed. My fingers are so swollen too and the skin just splits anywhere.

I suppose my greatest fear is needing to sleep. If I can nap for 10 minutes here are there then I will manage. A comfy recliner chair would be fine. I will take something to listen to and some ear plugs to sleep plus a book and puzzles etc. I’ve just bought one of those electric heat pads so I’ll take that too 😊

Do you have regular iloprost infusions Lucy and if so does it help you ?

Jo x 💕

LucyJean
LucyJean in reply to Bee1011

Hi Jo, sorry for the delay in response, I didn't notice straight off that you had asked me a question! I don't have regular infusions. My hospital no longer offers them as routine because it thinks they have very limited benefit. They tend to offer them if you are in crisis. I have had an infusion when I had digital ulcers on literally every finger and both thumbs! I had it in the October and things were pretty much settled by the Christmas. So, I guess we could surmise that it must have had some favourable impact.

I hope it helps you, and yes, you can be reassured you will be able to have naps and have a restful day.

all my best

Lucy xx

Hi there, I have one day iloprost Infusions at chapel allerton and the staff are fantastic, they do have beds as well as comfy chairs. My advise would be for you to drink plenty of water before and during infusions this will help you to hydrate while having treatment, I get up early on the day to take 2 paracetamol to help with any pain you can take your own paracetamol in with you but must tell the nurses what you have taken and when. Not everyone gets side affects, I do which are pretty bad but know that it's worth it for the results. I was extremely nervous when I first started on the Infusions but you learn what to expect as time goes on and what amount of infusion suits you best, you will start on 1 rising to whatever suits your body I personally cannot go past 2 and a half which I will be having tomorrow. Please try not to worry too much because the unknown isn't as bad as you may think. You can take food with you or get a sandwich at the hospital tea coffee and biscuits are brought round a couple of times so do try and eat as well. Take care and hope this has helped 🤗

Bee1011
Bee1011 in reply to Verily

Hi Verily, oh I’m glad to know the staff are nice and they have comfy chairs as well as beds. To be honest I’m not surprised to hear the staff are nice as I can’t fault any of the Rheumatology team at Chapel Allerton. I’m under Dr Del Galdo are you too ? He is fantastic, all his team are 😀. I moved to him after getting nowhere with my condition in Hull. It is definitely worth the journey.

Thanks for the advice regarding the painkillers and water 👍. I probably wouldn’t have drank much as don’t want to be trekking to the loo every 5 minutes but I’ll make sure I do now.

I saw a previous post of yours about you wrinkly fingers like you have just got out of a long bath. Mine do that too and when they do they are painful and ache. I wondered what was going on but it is probably the Raynauds.

Thanks for all your tips and advice it really has helped.

Take care

Jo 💕

Verily
Verily in reply to Bee1011

Hi bee1011, I've not been on the site much lately but was wondering how you got on with your Infusions. I'm under a different rheumatologist than you but I think they are all pretty thorough. I've got my next appointment tomorrow as I have them every month, when is your next one? 🤔

Bee1011
Bee1011 in reply to Verily

Hi Verily, lovely to hear from you again. Oh they were absolutely brilliant ! I got there at 8.50 was on infusion by 9.15. The lady opposite me had a reclining chair I didn’t but I was able to get on the bed and have a lie down when I needed to by the afternoon. By the time I got to 3.5 I felt a bit off, headache and sickly but after a couple of paracetamol I was fine again and managed to get to my max dose of 5. My hands seem to be a bit better, splits on fingertips healed and are happening less, raynauds seems better but can’t tell yet properly till weather gets colder.

I had a nice chat to the lady opposite and a lovely elderly gentleman but it was difficult to chat to anyone on iloprost due to social distancing as I didn’t want to move around the ward to much.

My next one is the 25th on this month. It’s a pity we aren’t on the same day we could have had a nice chat on the ward 😊

Anyway good luck for tomorrow 💕

Verily
Verily in reply to Bee1011

Aww well done, reaching 5 seems amazing to me I have been told that I shouldn't go past 2 and a half as I end up with migraine and sickness and diaheria so could possibly have to go down to 2 but it's worth it as it works for me but as you have said the cold hasn't set in fully. Maybe some time in the future we'll meet up on the ward. Take care and keep warm and safe X😁

Bee1011
Bee1011 in reply to Verily

Maybe I’m heavier than you as it goes on weight 😝 my max is 5 so I was pleased to get to it.

Oh yes that would be lovely to meet on the ward and have a proper chat.

Hope it goes ok today x

Verily
Verily in reply to Bee1011

🙏😁🤗

Verily
Verily in reply to Bee1011

All the best for your iloprost Infusions on Wednesday 🤗

Bee1011
Bee1011 in reply to Verily

Thanks 😊.

How was you after your last infusion ? x

try wild lettuce extract for pain mountain rose herbs 10 drops in the morning and 10 at night i take it works great. hope it helps love julie

Thanks Julie. Where do you get yours from ? I’ve seen it on Amazon but it’s out of stock.

Jo

ebay has it 18.00 and bigger hope that helps julie

Thanks Julie 😊

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