NHS limit on biologics?
I have had three different biologics over five years and this last one has stopped working. I can’t use methotrexate so that doesn’t help. Is there a limit on how many the NHS will fund please? I’m scared I’ll be left with nothing!
I don’t know the answer clinically...that will probably depend on your personal condition.
But it could depend on how many your local Health Authority will fund, but having authorised three, I wouldn’t think they would refuse if your Consultant prescribed it.
But there are other new drugs appearing all the time, so I’m sure you won’t be left high & dry.
I’m sure there are people on here who are on their fifth biologic. Hopefully they will come along soon.
Each NHS trust will have its own protocol, but usually there is a progression of starting with one or two anti-tnf biologics like Benepali or imraldi, then moving on to an Il-6 like Tocilizumab, or T cell like Abatcept. Or rituximab if sero-positive. So that’s 5. And then there are the JAK inhibitors.
So you are quite a way off exhausting all the options yet!
In days gone by when there were fewer options I think you were limited as no point trying more than two anti-tnfs is the first ones hadn’t worked.
Thank you. That makes sense as I’ve had Golimumab, Tocilizumab and Abatacept infusions. None work now so fingers crossed ( if we could anyway) that the next drug works. Take care and stay safe x
Hi Helix,
Is rituximab a biologic? I've heard good things about this drug. I've been on 3 already the third being Humiri it's worked wonders for me but unfortunately it's not as effective now. They can t prescribe me MTX or another Dmard in addition to the biologic due to past concerns. I'm hoping to get offered another biologic as opposed to Olumiant. I have not refused drugs offered to me but this one I will, have you refused drugs offered during your time with RA if so what reaction did you get?
Why don’t you want Olumiant?
Generally I’ve had great rheumies who have always discussed drug choices with me, and allowed me to tell them my views which they’ve generally gone along with. When I started biologics I was offered Rituximab, and refused it as I have a bad feeling about it. Which rheumy accepted and proposed Enbrel instead.
The reson why I dont want to try olumiant is common side effects are UTI s. I experienced debilitating UTI s from the age 9 u til I was 33. Several times so severe I ended up in hospital. Eventually I went privately and saw a great consultant whi after many scans advised me to have a Ureatha Dilatation it literally changed my life! However due to immune suppressed drugs I am now very susceptible to UTI s and have experienced a few since being on biologics. Humiri which I've been on currently, has been amazing with no side effects. The consultant ( not my normal consultant she is on a break) is thinking of Omuliant I conveyed about my concern about this drug as a consequence. I just have ( as you said with Rituximab) a bad feeling! My normal consultant is ringing me in a couple weeks and I feel if pushed I will have to push back. I really want to stay on my current Biolofpgic but it s not working, I'm hoping I can try another biologic. I really do not want to go on Infusions!
Rituximab infusions do give you a lot of freedom as you only have to return approximately every 9-12 months for many people. Some are much sooner depending on how your B cells return but the rheumy generally won’t give it sooner than six months. For me I would not want to be on a med which you need to have a monthly infusion for, but if it was my only option I would do it. Rituximab has been the best thing for my joints I’ve taken in the last 15 years but after 4 years it started to give me some side effects of sinusitis and catahhr wheeze that I have to manage and they’ve not found anything in my lungs. I’ve been checked out with CT scans. It’s a reaction and over production of mucus and I do not have any asthmatic issues. My bloods have been excellent all the way through Rtx since 2014 with hardly a blip on all results .. just a couple of borderline figures which weren’t really relevant to R.A. and my CRP is always under 5 and ESR negligible. Everyone has their fears and reasons not to choose a certain med. Or reasons to want to choose one! I had a mild case of shingles last year but maybe I’d have got it anyhow regardless of Rtx. It was gone within a month. I felt very reluctant to have an infusion med too at first, but my state of immobility was awful. I was told this would work well and it has. I hope you get the med you want that works well for you and here’s to good health and control of the RA. It is disappointing when a med you have velvet comfortable with taking loses its efficacy. I would not want recurrent UTIs either. Good luck. x
If you look at the NICE guidelines there is no limit.
You are probably remembering the guidelines from when there was only one type of biological treatment (with several different forms) so changing more than three times was not logical, as if you had failed to respond to that type you were not going to.
Thank heavens, it is a while since I had any up to date info, thank you for replying so quickly! I don’t usually haunt the websites but I will have a look at the Nice guidelines. It may be a while tho, the hospital said on the phone they are “ inundated” at the moment but to wait and I will get an appointment,
I hope you are as well as poss and enjoying the end of summer sun ( well it’s sunny here in York anyway!) x
Hi there,
Interesting question as I'm in the same position. I am on my 3rd Biologic Humiri which has been great for the last 8 months but has recently stopped working. I desperately want to be offered a 4th, as as we know whilst one biolifpgic may not be as effective another type may be. I have been told by a different consultant to try omulant ((think spelt wrong) it s a biologic tablet which I am not at all happy about due to the side effects with UTI s. I am going to be demonstrative and ask for another biologic. So fingers crossed for you too. But you defo wont be left with nothing for sure.
I hope we both find something that gives a bit of a reprieve from constant pain and joint failure! Take care x
...should not be used in patients with RA who have an increased risk of thromboembolism....May have something to do with it?
They cheaper I think, but newer so less history to help docs decide if it’s right for you.
I don’t know why they have developed a commonly used route map that goes block anti-tnf cells, then IL6, then B-cells, then T-cells and then kinase enzymes..... but it sort of follows the timeline of when these drugs were developed which makes me wonder whether there is huge logic in it!
I'm on my 4th biologic, possibly moving to number 5.
Thank you, which area health authority are you in please?
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