Inflixmab

[Brian1977]

Morning guys not posted for a while I've been feeling a bit low and fed up to be honest I'm currently having a bad flare up of my ulcerative colitis been on methotrexate for over a year now had uc for 2.5 years then developed peripheral spondyloarthritis then devolped axial spondyloarthritis so they started me on amgevita at the end of May but I've been getting worse and now the inflammation is spreading through my colon again I've also noticed the last month each week and now each day my walking is getting worse the pain in my back is getting worse. So they are changing to inflixmab infusions I'm wanting to hear good and bad news so please tell me some info and has anyone swapped. I guess I've never asked questions I always hoped 6 months down the line I would be normal but here I am 2.5 years later worse and can't work

[KittyJ]

Until you get some replies if you put that into the search box and filter for NRAS then all previous posts will come up.

[Brian1977 in reply to KittyJ]

Thankyou kitty

[Wobbies]

Hi, after 2 0ther biologics had failed, I was put on Infliximab with the same arthritic conditions as you. It has been the best so far for me with no side effects, so good luck.

[Amnesiac3637]

Hi Brian. Years ago, when I’d failed on all the DMARDs, Infliximab was my saviour. It was the first biologic I had and to this day, apart from the latest JAKs - Filgotinib currently ( brilliant so far) , I can honestly say it was the best of all the many, many biologics I was given. It, unfortunately stopped working but I had three very good years of hardly any symptoms at all. Do hope it may change things for you and you never know till you try! Best of luck for feeling considerably better v soon.

[madme1]

Hi Brian sorry you are not to good at the moment. So confusing when different brand names are used for the infusions. I started off years ago on Rituximab and was and was fine apart from burning patches on my face cheeks that lasted for a few days. I then went onto Infliximab and now Remsima which is a brand name of Infliximab. I'm ok on this but it's different for everyone, when I first started I had to take meds as usual, then in the hospital about an hour before the Infusion, but after the flush, I was given the choice of taking paracetamol, beforehand. Sometimes I would, especially during the first couple of sessions, which can take a couple of hours depending on your ability to cope with the flow rate. After the infusion you have another flush through your system which takes about 10 mins to 1/2 an hour. I'm now down to not needing the paracetamol and taking 700mg of Remsima over the hour, with the last flush taking 10 mins so you do progress. It can be very tiring even though you are on a bed or in a chair. I try to see it as an opportunity to get some bed rest, whilst being fed and watered and meeting new people. It was scary at first, but I had a very good team of dedicated nurses around me.

[Brian1977]

Thanks so much for the comments. I just worry another 6 months down the line and I'll be worse they told me I would be back at work in 6 months and here I am 2 and a half years later struggling to bloody walk but I need to keep trying

[wilbertjellyfish]

Sort to hear you're having a rough time. I think we all just start this thinking we'll get meds and be ok but then you learn it's never that handy.Can't say I've been on either but I'm learning to have a list of questions for the few appointments we have and to not be afraid to speak up.

Hopefully the new stuff works. Keep us updated

[Brian1977 in reply to wilbertjellyfish]

Thqnkyou do you know the worst and hardest thing mybwee boy has got right into football the last few months and I can't even kick a ball with him 😥😥😥😥 even trying to play fifa on the xbox my hands hurt too much holding the controller

[wilbertjellyfish]

I have kids too, I'm 46 as well.We got a new pup yesterday to replace the one that died of an epileptic fit when I was in hospital. I'm a vet and I might have saved it if I'd been here.

It's so hard saying to the kids you can't do stuff, at the minute I'm ok but that's because I'm taking lots of steroids but now I've to change biologic and see if a different one helps.

There will be better times I go swimming and the kids love the pool. Mine are old enough now to not need as much help.

[Brian1977]

I guess when you have kids you have to keep trying eh but even the best of us have bad days sometimes awww don't blame yourself mate good luck with the new pup the kids will have so much fun 💗💗