Has anyone had iloprost at the Royal Free in London recently?

[LilyInTheSun]

I've been recommended a week of iloprost in the next few months, and wondered what to expect, particularly in terms of practicalities like what accommodation you stay in (they said this was provided), meals, what to wear, how warm the infusion wards are, etc. Thanks very much!

[lindyanne]

Hi there!I can help you with some info as I have been a regular “iloproster” at the Royal Free for more than ten years.

You would have the treatment in the PITU unit, second floor, each room takes about a dozen patients in reclining chairs, well spaced apart for privacy . Treatment would take place over four or five days depending on how you are able to tolerate it and for your preferences re travel etc. The staff are wonderful in every way, very kind and very knowledgable with the needs of scleroderma/reynauds patients. The rooms are warm, you will be offered a blanket if you feel chilly and helped to be as comfortable as possible. The voluntary massage service is wonderful and definitely helps with relaxation particularly in the afternoons when the treatment can get a bit challenging.

You would be offered a lunch menu to choose from each morning. There’s a very good M and S food downstairs if you fancied anything different and it’s fine to take your drip trolly along for the ride, everyone’s very helpful in navigating lifts etc

Accommodation is now in the brand new Pears Buildings next door to the main hospital, the rooms are lovely and with tv and tea making facilities, breakfast is provided and brought to you early in the morning. Hospital wifi is available which is really helpful

If the iloprost infusions have been offered to you then it’s definitely worth considering, it can be really effective and likely to be a huge benefit

Hope that helps

Very best of luck

Lindyanne

[LilyInTheSun in reply to lindyanne]

Thank you so much for the detailed reply, Lindyanne!

All the information you provided is very reassuring and helpful! I actually ended up having to go for a different one-day infusion treatment a couple of weeks ago in the end, so I got to see the PITU unit, and the staff were really lovely, just like you said. And I've just had dates for my iloprost infusion now too.

It sounds like the treatment must be helping you, for you have it regularly, so that's also encouraging. I'm hoping it will help prevent me getting digital ulcers, as I'm still getting them despite being on sildenafil (although that has helped a lot).

Thanks again for taking the time to reply!

[LilyInTheSun in reply to lindyanne]

Sorry, one other question... Have you had any problems with them fitting a cannula? I tend to have a lot of problems, so I'm a bit concerned about them having to fit one every day for the week. Have you ever had a cannula kept in for more than one day? Thanks very much!