How often do you get your infliximab infusion in the uk

[macdonald88]

Just wanted to see how often everyone int he uk gets their infusions. I have been get it g it every 6 weeks for the past few occasions but I have just been to get my latest one today to be told I can't get it every 6 weeks due to licensingin the uk ? Has this changed cause I'm sure people get theirs varying from 4-8 weeks.

Thanks guys

 

[macdonald88]

Anyone?

 

[Grumbletum]

Hi there. I only had the three loading infusions, so can't answer your question but am just bumping your post. Did try posting it on the Remicade/Infliximab sub-forum too?

 

[macdonald88]

Thanks I shall post in their too. I hope everything is going ok with your infusion

 

[Absentminded]

Hi, apologies for not replying sooner, I've been away.

I had infliximab for two years, for the first year my infusions were every eight weeks and then moved to every four weeks until it eventually stopped working. I also had a few double doses to see if that would kick start the effectiveness again.

My Gastro team never had any issues with me having it four weekly for a whole year, it was their idea! I'm not sure if anything has changed recently, I stopped having infliximab about two years ago.

 

[macdonald88]

Thanks lucinda their has never been a problem before so I don't know why they are bringing it up now to be honest the nurses on the ward weren't very nice about and said I was the only one who got it 6 weekly, well everyone's case is different. I want to reschedule this one as I'm going on holiday on 30th April and when I booked it my GI said I would be getting it every 6 weeks so I booked it at the start of the infusion so I would be feeling my best and I could get the most of my holiday. If I didn't ge this one brought forward I would be at the end of 8 weeks and feel crap on holiday. I have an appt to see him again in 3 weeks but they wanted to cancel that and book it for 6 weeks!!!! As I was seeing him to frequently well when I saw him 2 weeks ago he wanted to see me in 2/3 weeks but the appt came in for 5 so I'm not waiting another 6 weeks! It's just frustrating I'm not sure what the medicine is doing as I'm never symptom free and like I said by week 5 all hell has broke lose again.

 

[macdonald88]

Out of interest lucinda what medication are you in now in seem to have been on all the ones you have an failed and I have recently stopped 6mp due to my liver functions not being right again. I'm wondering if I should stop infliximab but I don't think their is anything else for me to take.

 

[rygon]

I'm on remicade and have it every 6wks. I had my last infusion 2 weeks ago and was never told this

 

[Absentminded]

I haven't been on any medication since November 2012 when I had my first surgery. I've recently had op number 4 and am waiting to see my Gastro to discuss medications. My surgeon mentioned 6mp or methotrexate (I'm not too keen on the latter.)

I wouldn't want to advise you what to do, it's definitely something to talk to your specialist about. I don't blame you for being frustrated! Waiting for appointments is a pain!

 

[inflixiblab]

Hi, I haven't heard anything about remicade licensing issues in the UK.

I currently receive infusions every 6 weeks, next one in a couple of weeks. Towards the end of my cycle symptoms begin to return and I wouldn't really want to feel like that on holiday. Hope you manage to get this sorted.

 

[macdonald88]

Thanks guys I didn't thin their were any problems I think they are just being awkward, I feel like I'm constantly going round and circles every 6 weeks so whenever I have it every 8 weeks I dip really low the last few weeks then once I get it then takes a week or so to kick in again. I will speak to the gi when I see him again at the start of April.
I don't think their is any problems with the licensing I just think the nurses obviously don't see it often as I the only one apparently who gets it.

Thanks for everyone's advice