I've been on infliximab infusions every 8 weeks for my RA for almost a year now. I am finding they work wonderfully but only for 6 weeks. I then start to flare for the two weeks leading up to my next infusion.
My rheumatology consultant insists that you cannot have them any sooner than 8 weeks, however the unit that administers them says I could have them every 6 weeks?
Does anyone here having them for RA have them given any earlier than 8 weeks?
Thank you,
Sally
I was on Infliximab for several years before it stopped working (two years on Rituximab now and having yearly infusions) I was having six weekly infusions but if I remember correctly my Consultant had to put me as a special case due to the extra expensive of six weekly rather than eight weekly infusions.
it is up to your consultant how frequently each of his patients have an infusion…not the team who administer them I’m afraid. Maybe people who do get them more frequently have a different type of disease or some other reason to get more frequent treatments? Have you actually asked for any explanation besides just saying they don’t last any longer than 6 weeks? Maybe ask for a blood test just after 5 weeks to see if anything shows up?,
.
what was your crp level when you was put on them? what dosage of the rtx were you given?
According to NICE recommendations for RA:
Adult
"Initially 3 mg/kg, then 3 mg/kg, to be taken at week 2 and 6 after initial dose, then 3 mg/kg every 8 weeks, dose to be increased only if response is inadequate after 12 weeks of initial treatment; increased if necessary to 3 mg/kg every 4 weeks, alternatively increased in steps of 1.5 mg/kg every 8 weeks (max. per dose 7.5 mg/kg every 8 weeks), consider discontinuation if no response within 12 weeks of initial infusion (after 3 doses) or after dose adjustment. Maintenance treatment can be restarted after a drug-free interval if symptoms recur within 16 weeks of the last infusion."
So it looks like officially from NICE that there is leeway. But it might be that your consultant has a rigid thought process and just automatically says no.
It might be an idea to ask them if they know what the NICE guidelines are.
Hi. I get monthly infusions for my Raynaud’s and also just started Rituximab. Over the years on infusion ward I have come across many patients getting Infliximab - usually for IBD but also one for a rare skin disease. He gets it once a month and the IBD patients get it six weekly. But I’ve never heard of anyone getting it for RA - maybe different time interval based on cost?
The same happened to me and so now I am on 6 weekly infusions. Is it a cost thing where you live?
Yes I’m convinced our Rheumatologists are under pressure from the Trusts to try to reduce the costs of the biologic treatments they prescribe for us. At my recent appointment I was reminded I’m to be switched from RoActemra to Tyenne, a biosimilar (cheaper), and that I may only be getting half the dose (inject every 2 weeks rather than every week as at present ). Hope that will still work for me as have enough permanent joint damage already without encouraging more! ☹️
Yes I am being switched to a biosimilar and have my fingers crossed that it works. It has been a long road of different drugs that did not work to get here.
I am convinced it must be, they are so adamant it's not able to be done any sooner than 8 weeks but clearly on here it seems that is not strictly true so i imagine it is more to do with the budget xx
Hi. I’ve had RA since my 20’s. I’ve been on Infliximab for the past 20yrs & it’s always been 6 weekly. My Consultant said that’s the only way they’ve always done it. Not 8 weekly. They checked my antibodies the other day. I had the infusion on Wed. I find it exhausting. That’s when i love to get into bed with a hot bowl of soup & get my tablet on. Then a lovely deep sleep. The next day i’m quite sore. But within a couple of days after that. I feel the benefit. It’s just i get tired so easily. I really couldn’t do without this stuff though. I couldn’t walk without it!
hi sally I am in the same position usually two weeks before I have to increase steroids to cope with the flare like symptoms been like this a while but now the team are looking into having them more frequently as overall this is working but not lasting fingers crossed they follow through this time hope yours gets resolved.
Please could you update me if your team agree to do them more frequency? My team are literally adamant that this is not even an option and that it is NEVER done but yet it appears on here that it is possible so I wonder if it's more of a funding issue- I wish you the best and hope they can find a sufficient option soon xx
I’m seeing the consultant on Thursday so will et you know the outcome 🤞🤞
I had them every 3 months. Beware they are monitoring your BCells regularly. Those infusions wiped out all my B cells. So now Zi do not produce IGG or IgM. Made me immunosuppressed. So now for rest of life need to get IgG infusions every 4 weeks for the rest of my life. It is not an insignificant drug. It is used more frequently with cancer pts. But not over long term.
What if the RA is not RA?
RA or methotrexate? 
RA
My 1st Serious RA Attack.
