Tocilizumab: If, as I understand it, NHS England... - PMRGCAuk


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AncientMariner profile image

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.

28 Replies

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 profile image
DorsetLadyPMRGCAuk 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 profile image
PMRproAmbassador 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 profile image
DorsetLadyPMRGCAuk 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 profile image
PMRproAmbassador in reply to DorsetLady

I sat on my hands!!!!

PMRpro profile image

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 › 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.

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.

"Has anyone heard of or experienced Tocilizumab being continued beyond twelve months?"

Well yes I have ... me! I think I will be taking Tocilizumab indefinitely as there is no plan to stop it anytime soon. I have taken it for over 2 years. I don't live in the UK. The UK has a 1 year and done approach to treatment with an extension due to the pandemic. I don't know what the pandemic has to do with whether or not GCA is in remission but nothing seems to make any sense these days.

I will say that the goal of treatment with Tocilizumab is to induce remission. Whether that happens in exactly one year is debatable. The goal for treatment for PMR/GCA should be "remission" and not to "manage symptoms".

I have another autoimmune condition that involves my eye. My ophthalmologist has labeled that condition "steroid responsive" meaning that remission is achieved in a matter of weeks with high dose pred. It doesn't take years.

I also believe that Tocilizumab should be expected to induce remission. I'm somewhat peeved that there isn't much of an attempt to determine whether or not I'm in remission. Tocilizumab does work for me and I'm off prednisone for the first time in over 12 years so my rheumatologist and I are very pleased.

I would not wish for anyone to take pred "long term". If you take it too long, the outcome may be lifelong. That really isn't a good outcome in my opinion.

_charcoal_ profile image
_charcoal_ in reply to DadCue

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 profile image
DorsetLadyPMRGCAuk 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.

DadCue profile image
DadCue in reply to _charcoal_

I think there are three basic forms of almost all autoimmune conditions. There is the "short" form. There is the "recurring" form. Finally, there is the "long or chronic" form. Each form needs to be addressed differently. Pred may work reasonably well for the short and recurring forms. When the chronic form takes hold, there needs to be an alternative I think. Length of time that symptoms persist should be one of the deciding factors perhaps.

_charcoal_ profile image
_charcoal_ in reply to DadCue

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.

DadCue profile image
DadCue in reply to _charcoal_

That PMR lasts a median of 5.9 years because the "median duration of treatment with pred" is that long is just bizarre in my opinion. Some people end up taking pred for the rest of their lives because of adrenal insufficiency or because their adrenals atrophy and are unable to produce enough of their own cortisol anymore. That doesn't mean PMR lasted that long.

I'm off pred now but still being treated for PMR. I don't really think PMR has "burned itself out" because I no longer take pred. I'm willing to stop TCZ in order to see if it did. That can't be done easily once pred has been taken long term.

I think many people are misdiagnosed and probably didn't have PMR to begin with. In isn't like PMR/GCA are well defined and easy to diagnose. There isn't even a consensus in what the characteristics are. I pity those people because they probably end up with arthritis that wasn't much of a problem in the beginning of PMR.

_charcoal_ profile image
_charcoal_ in reply to DadCue

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.

DadCue profile image
DadCue in reply to _charcoal_

It is just my recollection of the confusion when I was diagnosed with PMR. I had a twenty year history of inflammatory arthritis before PMR was diagnosed.

The first flare of inflammatory arthritis was "short" -- maybe 2 months. I only received one large dose of prednisone and the pain and uveitis completely stopped. It didn't recur until 3 years later. It then started recurring more frequently but a large dose of prednisone and a fast taper solved the problem every time.

When PMR was diagnosed, the initial assumption was that it was a flare of inflammatory arthritis. I mostly wanted a prescription for prednisone and I would be on my way. My ophthalmologist always wrote the prescription for prednisone whenever I had a flare of uveitis. Prednisone worked for the pain caused by inflammatory arthritis too.

I didn't know anything about PMR when it was diagnosed. There was something different about the pain but the most notable difference was that there wasn't a simultaneous flare of uveitis. Prednisone was "restricted" for about a year because "reactive arthritis isn't treated with prednisone." A TNF inhibitor is usually tried.

It is a long story but when it was determined that I had PMR it was very clear to my rheumatologist that I still had inflammatory arthritis. I even asked what happened to reactive arthritis and she said I had both. She told me that I was going to be on long term prednisone for at least a year. I guess that I didn't believe her because I tried to taper off in a month.

After PMR was diagnosed, I had many flares of "something". It was never clear to me what was flaring. I don't think my rheumatologist knew for sure either. PMR was the primary diagnosis, I couldn't really tell if it was my joints or my muscles. Given that prednisone worked well for all the pain, I didn't realize that arthritis was getting severe throughout my spine. It isn't ankylosing spondylitis but something similar.

I have read many cases where PMR was diagnosed and many years later it turned out to be inflammatory arthritis. In the late stages of inflammatory arthritis it tends to be called OA. It should be called secondary OA because it isn't the usual amount of wear and tear caused by primary OA.

The combination of PMR and inflammatory arthritis isn't a good combination. To the extent that Tocilizumab may also help inflammatory arthritis, I wish that it was tried a long time ago.

_charcoal_ profile image
_charcoal_ in reply to DadCue

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 profile image
Rugger in reply to DadCue

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.

phebamom profile image
phebamom in reply to DadCue

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 profile image
PMRproAmbassador 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.

DadCue profile image
DadCue in reply to phebamom

I had many of the same symptoms. Mine were more about extreme fatigue, weakness, shortness of breath, no appetite but unable to lose weight. I was unable to exercise and had become very sedentary. Lack of motivation and maybe some depression was a problem. I wouldn't say that I had given up but I was having thoughts about not living much longer. I was tired of being in pain all the time. There were 3 surgeries done in period of about a year and a 4th major surgery for spinal stenosis was postponed after I took 60 mg of prednisone instead.

I wasn't very optimistic that Actemra would work based on what I was reading at the time. I can't say I felt any different for the first 3-4 months on Actemra. The only difference was that I tapered prednisone by 1 mg per month and didn't flare.

I started to feel more optimistic and started to taper by 1 mg per week. My rheumatologist told me to stop at 3 mg until I could see an endocrinologist. I stayed on 3 mg for about three months and an endocrinologist was who decided that I could discontinue prednisone.

I still have some of the above symptoms. I now feel like everything is gradually improving. I still say that I'm recovering but also liberated. I never want to go back to the place I was in. I still have some underlying medical conditions that seem prednisone related. Also, another autoimmune condition which isn't optimally treated according to my ophthalmologist. I still have some pain but it is tolerable. I don't expect to be pain free. I have been off prednisone for over a year now.

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

Rugger profile image
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 profile image
scottygirl73 in reply to Rugger

Welcome you with open arms.🤗xx

PMRpro profile image
PMRproAmbassador 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 ...)

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 profile image
PMRproAmbassador 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!!!

DadCue profile image
DadCue in reply to PMRpro

"The goal of therapy of rheumatoid arthritis is to achieve a remission or at least low disease activity. TNF inhibitors induce high remission rates only in combination with methotrexate, whereas the efficacy of tocilizumab is optimal even as a monotherapy. In this article, the differing dependence of the biological drugs on methotrexate is explained from the viewpoint of an immunologist."

PMRpro profile image
PMRproAmbassador in reply to DadCue

"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."

DadCue profile image
DadCue in reply to PMRpro

Flip a coin or try it and see ... I suppose.

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