NICE regulations

[Rosiesmummy]

Hello helpful people!

I’ve been told by my rheumatologist that I am only allowed to try 3 Dmards in my lifetime. I’m on my third drug and it’s losing effectiveness. Is this a nice regulation or is it just local policy? Any advice greatly appreciated

[medway-lady]

It is NHS rules same here. I expect to stop people just stopping one for what they perceive as mild side effects. But it’s biologics we were told about which are not DMARDs like MTX. I went to an NRAS meeting and the RA nurses told everyone but it is dependant on level of disease so if like me the disease is classed as severe but because I’m unable to access JAK meds due to CKD then that overrides the rule, however I’ve only had 2 and one was stopped because of infections not side effects.

[Amnesiac3637]

Hmm. A number of DMards is usually prescribed prior to biologics - next step up - so maybe if you haven’t responded well to all the usual stuff they try you on hoping that they’ll work, you’ll go on to be given either biologics or the newer JAK inhibitors. See what your consultant says.

There are protocols through NICE that the NHS has to follow, mainly due to cost, as some of these drugs are really expensive so you go up ladders ( and hopefully don’t fall down the snakes) as your disease progresses. I think the three DMard in your lifetime is probably what’s being followed right now and your drugs should be reviewed now they’re not working for you. Best of luck and hope you have a good outcome.

[HeadInASpin in reply to Amnesiac3637]

You may find this useful nice.org.uk/guidance/ng100/...

[Amnesiac3637 in reply to HeadInASpin]

Thanks. Interesting. I am right up the ladder having had all the DMArds known to science and all the biologics up until going onto the JAKs - Filgotinib currently- having failed on everything else! Quite pleased that over 30+ years I’ve been given all the options and it sounds now as if things have changed.

[Darwin in reply to Amnesiac3637]

Hi I’m the same as you. I had all the DMARDS then onto the biologics then at last the JAK but recently been told the new guidelines are no JAKs for over 65s if not already on them. My options were half my baricitinib or to try again with two other biologics that didn’t work for me when I did have them. I have gone for the half will see how I go.

[Kati66 in reply to Amnesiac3637]

You’ve used a brilliant analogy there amnesiac- snakes and ladders!!! That’s such a true description of dealing with RA 🐍🪜🐍🪜🐍 😂😂😂

[bpeal1]

I’ve just looked at the Nice guidelines (but only very quickly!) and didn’t notice anywhere where it set a limit on conventional DMARDs. You might want to look at it properly and then question your nurse. nice.org.uk/guidance/ng100/...

[bpeal1 in reply to bpeal1]

The section on DMARDs starts at page 25

[bpeal1 in reply to bpeal1]

Here is the pathway. nice.org.uk/guidance/ng100/...

[helixhelix in reply to bpeal1]

There used to be a flow chart that sat alongside this that set it out in more detail. I can’t find it now.

[bpeal1 in reply to helixhelix]

I know. I couldn’t find it either.

[Runrig01]

I suspect it may be a local policy by your Trust. My Trust only allows me to try 2 biologics, so my rheumatologist is always hesitant when I have a bad flare that lasts for ages. Thankfully they’ve usually been due to other health issues rearing their head, and once I started treatment for those, my flare would subside and I could continue on my current biologic. There policy should be available for you to view, if you search google for it.

[vonniesims]

Ah, maybe that is why my team are reluctant to change my biologic I'm on my second. Increasing my Methotrexate has sorted it for now

[helixhelix]

it is not a regulation but guidance - although most health trusts consider it as regulation.

I can’t find a link, but the nice guidance still restricts biologics to people who have tried at least two conventional DMARDS and failedor not had a enough of a response. There is then a protocol for the b-DMARDSps and the order they should be tried in. I seem to recall it is three, and then the possibility of a JAK.

Have you tried a JAK yet?

I think you can also write to the health commissioner to make a case for further treatment if this third one does fail.

[helixhelix]

I’ve found this from one health trust, which is a more colourful version of the flow chart I remember. And provides for 5 biologic treatments before the pathway ends.

And it says that treatment requests beyond the pathway are not routinely considered - which means they could be as an exception! So don’t let your health trust off the hook,

hertsandwestessex.icb.nhs.u...

[Clare-NRAS Partner NRAS in reply to helixhelix]

This is the issue there is postcode lottery as to which Trust/ICB the hospital is under. We are calling for evidence of variance and building our case for clarity and to address this inequality and inequity of care.

[AgedCrone]

He probably means you need to have taken & failed on three DMards including Mtx before you can move on to Biologics/JAKS.

Don’t worry you won’t just be abandoned.

[BoneyC]

My previous Rheumatologist (Director of Rheumatology) told me about 10 years ago I would never take MTX again when I was neutropenic. I tried 2 biologics both failed, one gave me recurrent UTI's, the other did nothing. Surprise, surprise, he put me back on MTX!

[tyncwmmarchhywel in reply to BoneyC]

Hi BoneyC, how are you doing on it this time.

[BoneyC in reply to tyncwmmarchhywel]

Fine, been taking it now for over 40 years.

[Philjania]

interesting how different NHS trusts interpret the rules. I’ve had every DMARD known to man over the last 20 years, all with no or limited effect on RA. I’m now on my 8th or 9th different biologic so I guess I’m lucky that our local CCG permits this. It’s complicated by the fact that clinically I’m under North Staffs but as I live in Cheshire, funding has to be applied for. Not once has it been declined. I would expect if the NICE guidelines (and that’s all they are) state that only 3 DMARDs are permitted, that it is open to challenge as the condition needs treating. I would start that challenge with the Rheumatology team and don’t give up!!

[Amnesiac3637 in reply to Philjania]

Couldn’t agree more. I too have had the lot and never, ever been refused any treatment or not been funded over 34 years. I, like you am funded by a different Trust but that has never caused problems either. It’s such a lottery but people should not be frightened by statements which sound as if they may be denied the drugs needed. Good advice to challenge the organisation!

[Inanotherlife]

Interesting. I was told by my previous consultant that after 4 biologics that was your lot!

I daren’t ask anymore at the time but what would actually happen? Just left to it or huge doses of steroids? Stem cell therapy?

[Clare-NRAS Partner NRAS in reply to Inanotherlife]

See my reply in this conversation. This should not be the case. Many people have to try 6,7,8 advanced therapies before finding the one that really works for them. Not enough research yet into stem cell therapy in RA but still being investigated. Steroids are not the answer and can have long term side effects and should be used as sparingly as possible as bridging therapy or low dose as stabliser. It worries me when I hear stories like yours. If you are being told this now please do send us your full story [e-mail] so we can add it to our evidence we are compiling with the professional body BSR.

[Fra22-57]

I was told you had to be on 2 dmard before a biologic but cases can vary as I’ve see people on just one before.why don’t they offer you a biologic to help you

[Clare-NRAS Partner NRAS in reply to Fra22-57]

Biologics are not suitable for everyone as RA is more of a syndrome than a one size fits all disease. For more information about how RA medications are used, when and how you can download our Medicines in RA booklet from our website nras.org.uk/publications

[Fra22-57 in reply to Clare-NRAS]

Yes I know. I was trying to he helpful

[davannh]

How incredibly short sighted this policy is. Do they (NICE) take into consideration the ongoing effects of RA. Damaged joints that need replacing, chronic illness caused by inflammation, inability to work etc etc. Taken to the inevitable conclusion, major disability taking away individuals independence costing the government more.

My RA started in the 1970’s when there were no magic Biologic drugs. As a result I have had two elbow replacements, two wrist fusions, bilateral foot reconstruction, knee replacements. My lungs have been impacted, and inflammation has caused other issues. In today’s world with the drugs available I believe the joint damage would not have occurred and my health in my 70’s would have been better.

To restrict people to just three Biologics I believe is shortsighted. Especially with the advent of Biosimilars which are less costly.

[Clare-NRAS Partner NRAS in reply to davannh]

NICE is not the problem here it is 'misinterpretation' of the guidelines and restrictions being put in place due to 'cost' not clinical decision making. The clinicians are as frustrated by the issue as the patients are. NRAS and BSR are doing a piece of work on this currently as a follow up to the work we did in 2019 (pre-covid) on this specific issue. Then it was the CCGs imposing restrictive prescribing pathways now we are hoping things are improving under ICBs but I think it's unlikely so we are asking for evidence etc.

[Clare-NRAS Partner NRAS in reply to davannh]

It is not NICE making those restrictions it is the ICBs or commissioners designing local prescribing pathways.

[davannh in reply to Clare-NRAS]

Hi Clare, I obviously misunderstood my Rheumatologist. I was sure he said that Nice guidelines were that only three biologics could be tried. However the trust that he works for does not enforce that (luckily) and I am about to start on my sixth or seventh biologic.

However whichever organisation is advocating this policy it is short sighted as years with uncontrolled Rheumatoid Arthritis is more costly and damaging both to the individual and the health service supporting them.

[wilbertjellyfish]

I was told that two were pretty similar so if one didn't work the other wouldn't either. Can remember which one.

[Clare-NRAS Partner NRAS]

This is not the case at all. No where in the NICE guidelines does it say this. I would welcome an opportunity to speak directly to you about as we are working with the British Society for Rheumatology on the inequality of access to medications across the UK so your experience would be incredibly helpful to highlight this issue. Please could you email me directly [e-mail] so I can understand more about your current situation and where in the UK you live.

In summary if a DMARD or Advanced therapy has been licensed by MHRA and approved by NICE for use in the NHS then restricting access is in contravention to the NHS Constitution. We are finding that it is more to do with ICBs/Health Trusts restricting medications on 'cost' grounds not on clinical grounds and this is what we and the BSR are trying to get to the bottom of. If anyone else has been told they are only allowed x number of medications then please let us know ASAP. thank you.

[Fra22-57 in reply to Clare-NRAS]

I had tried 3 biologics that didn't even start.I was experiencing so much pain but was told I wouldn't be offered any more medication. I had to see another doctor down in London for another health problem who wanted to know all my diseases.He sent a letter to my rheumatologist advising him to give me a biologic he recommended. He didn't. He wrote again, and then I was called in for an appointment .I was given a different biologic but it is working thankfully

[Moomin8 in reply to Clare-NRAS]

Hi,

A year ago, I posted about the same thing. I had my rheumatology appointment and was told that as I'm on my 5th biologic, that was my last one! One of the liver results is adversely affected by my Tocilizumab, and she said that if it raises too much I'd have to stop my Tocilizumab. Tocilizumab really works for me; I was so upset. My hospital is under the Mid and South Essex NHS Foundation Trust.

[Celticdancer]

Years ago I read and was told that you had to try 3 DMARD`s before you could be put on the Biologics. It`s obviously a lottery as to what treatment you get dependent to what area you live in. The NHS is changing guidlines, policies to suit itself and not for the patient`s benefit. Alot of medications are no longer available to the over 65`s as they used to be as the NHS don`t care about the elderly and disabled. They see it as a waste of money to give medications to the over 65`s - disgusting. I have a relative who is over 65 and trying to get HRT which they`ve been on for years. The Doctor has said there is no reason why she can`t have it but a Nurse practitioner at her GP practice is going against the Doctor and saying she can`t have it because she`s at risk of cancer etc. I call BS on it and it`s the NHS wanting to save money - they just give bad excuses to hide the fact they don`t want to spend money on and they don`t care about elderly patients. It will get worse even though it`s already really bad as my relatives can`t even get a face to face appointment with a Doctor anymore. Painkillers are being more restricted than ever before as confirmed by many pharmacists I`ve asked and the official reason is to stop opioid addiction, wastage of meds etc but again it`s to save money because opioid addiction has been around a long time. So many people I personally know that are going private as they cannot get treatment on the NHS. I think the same that`s happened with NHS dentists gradually privatising is happening with GP`s and other NHS services so people don`t notice until it`s far too late.

[Clare-NRAS Partner NRAS in reply to Celticdancer]

nras.org.uk/resource/guidel...

The various guidelines do get updated and changed over the years and NRAS is calling for a review of the current NICE guidelines but this is not a quick process. With the advent of more RA medications with different modes of action, it is timely to review the entire guidelines and sequential prescribing pathways. Ideally giving more freedom to the clinician to decide what may work best for their individual patient rather than a 'one size' fits all approach to treating RA.

[Wannabeabago]

Hmm.. in Australia that is t the case! I’ve been through them all.

[Bookworm55]

Well I’m on my 5th and my consultant has told me there are ‘plenty more to try’!

[Rosiesmummy]

Thank you lovely people! I knew I could rely on your knowledge and kindness to give me food for thought.