Rheumatology visit. News to me! Biologics pathway - I'm on the last option!!! 😲😭

[Moomin8]

gmmmg.nhs.uk/wp-content/upl...

This is a link to a PDF which talks about pathways for rheumatoid arthritis.

I had my 6-monthly rheumatology appointment today. Everything is going OK ish at the moment. I have a few bits and pieces, but mainly Methotrexate (injection) Tocilizumab (injection) and Sulfasalazine (tablet). The ongoing funding was applied for my Tocilizumab, which was good. Then my clinical nurse informed me that as I am on my 5th biologic, there is nothing further they can offer me if (and when, let's be honest) it stops working! 😲I said "Pardon me? You mean that's it? You can't offer me anything after this?"

She was very apologetic, but said that the rules changed last year, and that yes - I wouldn't be offered anything other than what I'm on now...then she corrected herself and said that actually, I wouldn't be able to have Tocilizumab once my DAS score and inflammatory markers started to rise to show it had stopped working. Plus, if my liver couldn't take anymore, I would have to stop!!! My ALT is already beginning to rise above the normal range 😭

I walked out of there extremely upset and totally fed-up.

Has anyone else heard of this?

She said that my rheumatologist could (emphasising could) try and put forward an individual case, but that it was unlikely to come to anything. So, am I to rot away in an inflammation nightmare when I'm older???

I am so cross and very demoralised. 😡

[Madmusiclover]

You might want to try the NRAS helpline. See if they know more. It might be local to your health authority…. Or not.

[Moomin8 in reply to Madmusiclover]

Thanks 🙂

[Gnarli]

That's obscene! NRAS, Health Authority, MP? I do hope you get a different decision

[Moomin8 in reply to Gnarli]

MP sounds like a good idea. I think I need to get some facts in writing before I move in that direction though.

[helixhelix]

This must be guidance from your local healht trust. The national NiCE guidance doesn’t have this. It says:

1.2.1 Treat active RA in adults with the aim of achieving a target of remission or low disease activity if remission cannot be achieved (treat-to-target). Achieving the target may involve trying multiple conventional disease-modifying anti-rheumatic drugs (cDMARDs) and biological DMARDs with different mechanisms of action, one after the other. [2018, amended 2020]

[Moomin8 in reply to helixhelix]

Thanks. The link I attached wasn't from my actual authority because I couldn't find anything specific. Could you give the link for the information above please? Apparently the limitation of 5 biologics came in last year. I should have asked for confirmation of that in print.

[Hidden]

With the caveat that I’m not medically qualified. A couple of quick thoughts, the first being that regardless of what the nurse said to you, that’s not what the document says. It just says any drugs after 4 failed biologics are automatically an IPF application process. Going off that, your tocilizumab will have been one. If/when that fails, the consultant can do exactly the same again to request something else, and I really can’t see them not doing so when leaving you unmanaged will cost the NHS just as much in the long term, if not far more. I’ve seen other CCGs with the same policy about using IPFs after 4 biologics have failed, but no one else on here has posted to say they’ve been thrown on the patient scrap heap: I truly think she was talking out of her bum. I was once told by one of my nurses that there were only 3 biologics licensed for PsA, so I only had one option left if I fail the current biologic I’m on, and that was also total nonsense. The reality is that they don’t always know their stuff the way they should, including their own departmental and/or local CCG policy.

What I do know is true and does need to be kept in mind, is that once a drug has deemed to have failed for any reason, even if that’s just lack of response, then there’s no returning to it. So as patients we do need to be sure that we give meds time to be effective, or for side effects to settle, before asking to try something else. The biologic pool itself is limited, and they won’t all work for everyone. But conventional DMARDs to use alongside biologics aren’t limited solely to methotrexate, so if you hadn’t tried leflunomide, my understanding is you could potentially swap mtx for that: triple therapy is allowed, and there are a small number of other tweaks that can be tried to enhance effect when options really are dwindling.

[Moomin8]

Thank you taking the time to write me such a detailed reply. I really couldn't believe what she was saying tbh. My clinical nurse is usually really lovely and it shocked me. I have been on Tocilizumab for around a year, and have seen her over 3 times whilst taking Tocilizumab. So why choose this visit to say what she said? It was as if she was giving me a heads-up for what is coming! Very upsetting. We all know that stress can easily bring on a flare, so not at all helpful 😒

[Kentishman]

I exhausted biologics (two worked buy]t failed after 4 years) and am now on a JAK inhibitor which is successfully working on my PsA. 🤞Hoping that by the time these fail, a range of new drugs will exist.

[Moomin8]

Glad it's working out for you- long may it last!🤞

[Suzie45]

Morning,

My Rheumatology team have been great ! I have only been diagnosed with RA nearly 2 years ago! I am currently taking s/c MTX and a JAK inhibitor. I’m currently in low disease activity and am back at work. Some days are harder than others. I have exhausted other DMARD’s and reacted to biological (came out in Psorarasis). There are many combinations of biologics and JAK inhibitors that you could try and might work for you. Don’t give up hope your Rheumatology Team have a duty of care to treat your RA to achieve remission or at least low disease activity (NICE Guidelines). Good Luck 🤞🏻 crossed for you xx

[Moomin8 in reply to Suzie45]

Thank you for your support 💜

[HevsK]

my previous rheumatologist told me that RA patients are only allowed 3 biologics and that he “had laid his neck on the line” to give me a fourth which was a Tocilizumab and I was on it from Mar 2011 till Jun 2021 when my DAS etc showed it had given up on me. My new rheumatologist stopped it and I was on steroids and pain meds only until funding was agreed for me to start Baricitinib in August this year so biologic No5 and is already very effective. My rheumatologist hasn’t said anything about what might come next, obviously I’m hoping for a few years on Baricitinib because I’ve had everything else available to me over the last 42 years. Moomin, I hope that the Tocilizumab works for several years for you and you get some respite without worry 🤞🏻x

[Lolabridge]

Hi Moomin

I saw a private Rheumatologist in Harley Street yesterday to get Evusheld. Whilst there I asked about Tocilizumab as my Rheumy wants me on it instead of Rituximab. She said it works really well for many of her patients even those who can’t tolerate methotrexate like me.

So I hope it continues to work really well for you as long a you need it! 🤞🏻

[Evie3]

😭😭

[Celticdancer]

There are quite a few biologics out there but I think they must have changed the guidelines as it comes down to lack of money and the NHS is near full collapse from what I`m seeing all around. Maybe think about other ways you can help your health as well, look at diet, foods that flare you, foods that don`t, regular vitamins and minerals, different exercises, activities that help your joints, massages, shoes, insoles, supports, pillows, any equipment, aids that might help. The NHS just don`t care anymore. It`s frightening now, I`m sorry I can`t say anything more positive.

[Hidden]

Hi Moomin8

For what it is worth... sometimes nurses shoot their mouths off without thinking. I suspect this one has...a hospital nurse once told me he was pretty sure I had a clot in my lung the night before a CT scan which turned out to be fine! First time admitted to hospital. Didn't sleep much that night!

Obviously some nurses are great but I've met a few over the years that do this...

They won't/can't leave you high and dry. Take care 💐

[hatshepsut]

I would take her comments with a large teaspoon of salt. Apart from anything else, she had no right to say that to you, making you unutterably stressed.. Totally unprofessional.I have been on 5 different biologics, and 2 different Jak inhibitors. We are not all lucky enough to find the right one. I have never been refused a change

Personally would email your consultant and ask for a statement of their policy. Then you have something in writing, either to reassure you, or to give you policy to fight against.

Life is difficult enough for everyone atm without people consciously adding more stress. Take care x

[Moomin8 in reply to hatshepsut]

That's a good idea, thanks. I hope you find something that suits you soon.

[wilbertjellyfish]

I'm in northern Ireland so it might be a bit different. I was told after the third I was "running out of options" I'm now on my fifth. It's not working as well as the first ...which was stopped because I couldn't get the pred below 5mg. I'm currently on 10 and not making progress getting it down.

The nurses are great but it's not their decision .

I fully understand how crap it makes you feel when they tell you about having no options left etc...as if we aren't already coping with enough .

It's not easy but you need to try to put it out of your mind and cross that bridge if and when you come to it.

[Moomin8]

Thank you for your kind and thoughtful support.