Tocilizumab

[AncientMariner]

If, as I understand it, NHS England only funds this drug for one year per individual then I will reach the end of my allocation in late July. It has taken months on this drug to cover the reduction in Prednisolone and I am now down to my lowest level ever. My Ophthalmologist is also discussing reducing the Methotrexate but I cannot see how this can happen if the Tocilizumab is stopped as there will be nothing to keep the GCA in check. I have to add that before Tocilizumab the Methotrexate plus Prednisolone reduced to 12mg together could not contain a further relapse. Has anyone heard of or experienced Tocilizumab being continued beyond twelve months? It all seems rather pointless and disappointing like supporting Birmingham City F.C.

[Devoid]

Hi it was extended due to the pandemic but now it appears no one knows what is happening, I have now been on it 18 months and heard this week that I’m getting another delivery which will take me to early September, it really does need sorting out for the people it effects

[DorsetLady PMRGCAuk volunteer]

Can't comment on BCFC - rugby fan myself...nor TCZ as never took it, but as you say it's not a very good system.

Have to say with my GCA, a slow taper on Pred only (no add ons) resulted in no flares... maybe just lucky, or a sensible doctor (not a rheumatologist) allowing me to reduce without being hassled!

[PMRpro Ambassador in reply to DorsetLady]

I thought Georgina's comments about relapse yesterday in the talk were telling. I was muttering in my beard about relapses being associated with trying to reduce too fast.

From the start of my association with PMR/GCA I have talked about literature warnings. There are two main ones that matter: don't get distracted from a GCA diagnosis on the basis of age and speedy reductions being a risk factor for relapse, relapses are almost always due to reducing too far or too fast. No getting away from it.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

I was about to send in a comment about that yesterday when my podiatrist arrived - early!!!. Of course when I got back to PC it had ended. Grr! Mind you comment may have been censured anyway....,

[PMRpro Ambassador in reply to DorsetLady]

I sat on my hands!!!!

[PMRpro Ambassador]

The hope is that the action of the TCZ has extinguished the ongoing creation of inflammation so it burns out more quickly than it would normally - and that is how the pred dose can be reduced. They have also completed a follow-up study monitoring for relapses which certainly indicates that it achieves that end for 42% of patients.

I googled "follow-up giacta trial" and got a link to

medically.roche.com › gca › eular-2019

Long-Term Outcome of Tocilizumab for Patients ... - Medically ...PDF

which you get as a download where the results are presented as a Powerpoint slide show - as a pdf.

healio.com/news/rheumatolog...

is an article about it which is a bit easier to look at.

It seems continuous treatment is not required to maintain remission and when there is a relapse it can be got under control quickly.

[_charcoal_]

'The goal for treatment for PMR/GCA should be "remission" and not to "manage symptoms".' If this principle were adopted by the medical profession, it would greatly clarify their approach to this disease. At present, it seems mired in unclarity and inconsistency.

For example, prednisolone tapers are standardly recommended that are far, far too steep even for patients who have a shorter form of PMR. This induces flares, potentially lengthening the time taken to go into remission.

It also might prompt a rethink on the deployment of Tocilizumab -- I'm thinking of the UK here -- and other drugs that could facilitate remission.

[DorsetLady PMRGCAuk volunteer in reply to _charcoal_]

Polymyalgia Rheumatica, it’s a self-limited disease, which means it goes away by itself, sometimes after a couple of years, but in others, it can be more chronic (long-term) and can linger for much longer.

So it has to be managed, no doctor can tell you when it will go into remission, neither can any drug “facilitate remission.”

All any other drug does, at the moment, is act as a steroid sparer.

[_charcoal_]

These are the lines I was thinking along regarding alternatives to pred. The gap between the supposed duration of PMR and the average time people are on pred -- 5.9 years, according to one paper -- surely should give food for thought. Many such cases, as someone used to say! And probably coming under several different headings, including but not exhausted by the ones you suggest.

[_charcoal_]

Agree, and very thought-provoking all round.

many people are misdiagnosed... they probably end up with arthritis that wasn't much of a problem in the beginning of PMR. Could you expand on what you mean here, please?

ETA not sure if you mean the arthritis worsens bc, due to the misdiagnosis, it wasn't treated, or that pred exacerbates arthritis.

Of personal interest bc I have OA.

[_charcoal_]

Thanks very much for that, and the links. I've had mild, hereditary OA since I was in my thirties, easily getting RSIs, etc. Gave up playing the guitar but recently found that playing bass guitar is actually a beneficial finger exercise! Mandolin too, anything without barre chords. Glucosamine worked as an anti-inflam for me, but swimming probably brings the most benefit. Definitely a stress and tension element to it.

[Rugger]

The reason for the extension of Tocilizumab in the UK, "due to the pandemic", is so that we patients don't have to attend numerous appointments while being assessed for and established on another medication, such as Methotrexate. It has bought some of us a little extra time on TCZ, over and above our 12 month ration! The 'ration' appears to be due to finance, even though there are small numbers of us on TCZ for GCA.

[scottygirl73]

Hi yes i have been on Tocilizumab for a year and a half,my Rheumy said there is not a time limit on when it will stop.I don't have gca ,maybe its different for each area how long you can have it for.xxx

[Rugger in reply to scottygirl73]

It seems that Scotland is applying different criteria! It's NHS England 🏴󠁧󠁢󠁥󠁮󠁧󠁿 that has imposed the 12 month ration of TCZ for GCA. Now we know where to emigrate to! 🏴󠁧󠁢󠁳󠁣󠁴󠁿

[scottygirl73 in reply to Rugger]

Welcome you with open arms.🤗xx

[PMRpro Ambassador in reply to scottygirl73]

Has your rheumy smuggled it in as an arthritis diagnosis I wonder? It isn't approved for PMR and without approval it can only be used off-label or as a special case. There is no time limit for using TCZ for RA (which seems rather unfair to me ...)

[Chrisellie]

Rather than me going through my details, if you look at my profile it is detailed there. I had GCA, LVV PMR. This may alleviate some of your fears but I was never on Methotrexate. I couldn’t see the point of this along side Tocilizumab . There may be other reasons you are on Methotrexate.

Hope all works out well for you.

[PMRpro Ambassador in reply to Chrisellie]

They commonly use MTX alongside TCZ for inflammatory arthritis - not sure if it works in PMR/GCA the same way but some have some strange ideas!!!

[PMRpro Ambassador]

ard.bmj.com/content/75/11/1917

"In RA patients with inadequate response to methotrexate, tocilizumab added to methotrexate more rapidly suppressed inflammation than tocilizumab switched from methotrexate, leading to superior clinical efficacy and prevention of joint destruction."

[phebamom]

Were you sick when you were getting off of prednisone? I am very sick, weak, with weight loss, nausea, bone and muscle pain, 5th infusion of Actemra. On prednisone for 10 years. Down to 6mg. and in agony. In the past I could never get below 10mg. prednisone. Just wondering if this is normal

[PMRpro Ambassador in reply to phebamom]

Those are all signs of adrenal insufficiency and you should discuss them with your doctor. Actemra reduces the dose of pred you need for the PMR but it still takes time for adrenal function to normalise.