Tocilizumab treatment extension, and latest PET-CT scan results

[Suzita76]

Three weeks ago, I discovered (via this wonderful group) that the NHS had decided to extend Tocilizumab injections until March 2022 (and indeed, my suppliers, Lloyds’ Homecare, arranged a delivery whilst I was away visiting my mum).

2 days later, my Consultant emailed me to say that she had re-submitted an application for individual funding (IFR) for me to continue with Toc.- she had not received any notification from the NHS about the Tocilizumab extension.

She had also requested a PET-CT scan to see definitively if the Tocilizumab injections had been able to stop the attack on my arteries (- I have now been on Tocilizumab weekly injections for 2 years, and for the past 14 months, have been completely off Prednisolone).

I had the PET-CT scan 10 days ago, and my consultant emailed me last Friday evening to say the results look excellent, and there is no evidence of active large vessel inflammation. This is incredibly reassuring and I know how lucky I am that I was able to have Tocilizumab, and also that I am one of the fortunate 1 in 3 for whom it seems to work almost miraculously (especially as I cannot tolerate Prednisolone).

What worries me though is that my consultant said she STILL has “not received formalised publication of the NHS Rapid Policy Statement” (on the Tocilizumab extension). I wonder how it is that Dr Sarah Mackie found out this information so quickly, and could she advise other Rheumatology consultants on how to improve communication of such important decisions? I know we must all look after our interests as best we can (and this forum helps us so much), but it really shouldn’t be up to patients to have to pass on the information.

[SheffieldJane]

I am a patient of Dr Sarah Mackie as are a couple of other people on here. I think she has yet to receive a formal response to her application for an extension to Tocilizumab, for individual patients. She is actively involved in research projects on our conditions and is a great advocate for us. This maybe why she was made aware of this welcome decision quite early. Who knows, she may have been part of the decision making process. Surely it is up to consultants to keep abreast of developments in their area. I am glad you were able to give your Rheumatologist the heads up.

[Suzita76 in reply to SheffieldJane]

I am sure you are right, dear lady- I have, in the past, passed on relevant research papers to my group of Rheumatology consultants but get the impression they feel I’m an arrogant “know it all”, but I find it so frustrating that they don’t seem able to keep up with latest findings. Pressure of work I’m sure, but it is a real pleasure for me to try to keep up with the latest research- I really miss it now I’m long-retired, and just want to help!

[SheffieldJane in reply to Suzita76]

Well we love you just as you are.

[TheMoaningViolet]

I am sorry to ask this as I am sure it has been discussed and I must have missed it, but why do they have to extend Tocilizumab, is NICE considering withdrawing it and if so why?

[PMRpro Ambassador in reply to TheMoaningViolet]

It was only ever approved for use for 1 year from starting to use it for GCA - that doesn't apply for RA as far as I know. So Covid brought about an extension because of the difficulties of switching to something else like methotrexate which requires close blood monitoring in the first few months and means exposure to clinic settings

[Suzita76 in reply to PMRpro]

.... and Methotrexate results for treating GCA/ LVV have been shown to be “ equivocal “, and for people for whom it MIGHT work , takes at least 6 months to a year to show any possible benefits.

[PMRpro Ambassador in reply to Suzita76]

That's for using it on its own - TCZ is expected to induce remission in the year and then MTX is being used (almost certainly without evidence) to keep the immune system suppressed. I'm not convinced either - but MTX is cheaper isn't it ...

[Suzita76 in reply to PMRpro]

... but methotrexate is a generalised metabolic inhibitor, affecting the body’s ability to make ALL nucleic acids and proteins to some extent, and so is bound to have unwanted deleterious side effects. Tocilizumab is so much more targeted. OK, methotrexate is cheap, but then so is cyanide! ( sorry- I’ve “gone off on one” there, but I feel very strongly about the way medics try to cajole us into taking certain “ cheap” treatments . Whatever happened to “ First, do no harm”?!!

[PMRpro Ambassador in reply to Suzita76]

Don't tell me - tell NICE who make the rules.

[LemonZest11]

Hi Suzita76, unrelated to your querie, can I ask you a question? I get the impression that you were prescribed tocilizumab for LVV, rather than for PMR, as was I? I am successfully 🤞 down to 1mg prednisolone, and I have my tocilizumab jabs 3 weekly, due to neutropenia. I saw my rheumatologist today and she has asked me to continue to taper the 1mg (should take me another few weeks), and to go to 4 weekly jabs, for the next couple of months, and then just stop. When I told her about others continuing to stay on tcz, she said that only RA patients need to continue long term. She went on to explain that I am not covered for another script because I don’t have RA. Is it the same for you? I’m in Australia.

[Suzita76 in reply to LemonZest11]

Hello there, I really must fill in my profile- sorry! I live in the UK, and as PMR-Pro says, NICE only allowed Tocilizumab for one year for GCA/ LVV, but the pandemic caused the NHS to reconsider and extend (thank goodness!). They were supposed to be reviewing the one year decision sometime in 2021, but I imagine everything has been put on the back-burner because of Covid.

I was diagnosed with GCA more than 4 years ago shortly after a bout of Shingles. I had what I now realise are the classic symptoms ... unable to open my mouth, and headache at temples that was not touched by pain killers.....( and was lucky to be having dinner with a retired GP friend who made me phone for an emergency prescription of steroids).

The high dose steroids stopped the symptoms BUT I almost killed myself because of terrible psychosis and hallucinations caused by Prednisolone.

I will complete my profile later today- promise! so that it might help others with similar history. I have had no pain for 4 years but several relapses, and high Prednisolone again triggered psychosis, and my inflammatory blood markers went through the roof (but no pain!) so my consultant sent me for a PET-CT scan which showed extensive severe (but asymptomatic) attack on my major arteries ( LVV).

She then tried to put a case for me to get Tocilizumab ... which took another 8 months, and another relapse. It worked very quickly for me and I was able to stop taking pred. more than a year ago. I am very fortunate that I do not have PMR which must be horrible.

[LemonZest11 in reply to Suzita76]

Oh thanks, all makes sense. I too have LVV, and life is good with to tocilizumab. Just interested to know if you can continue on it indefinitely.

[PMRpro Ambassador in reply to LemonZest11]

The follow-up study found that you can discontinue it and restart if there is a flare of symptoms. I don't think there were any specific timescales.

[LemonZest11 in reply to PMRpro]

Thanks. I mentioned that to my doc. She's not wanting to discuss future possibilities at the moment, understandably optimistic. But I am wanting to be prepared. She did mention that drug starting with m with an x in it. Because my jabs are spread out, I have been stockpiling tcx. I know I'm not in remission so let's see. 🤞

[Rugger in reply to LemonZest11]

At the moment, those of us in England with GCA or GCA/LVV and have been on it for a while, have only until the extension due to Covid expires in March 2022, when our 'allocation' will stop. Anyone who starts TCZ now will, presumably, just have the year's allocation, unless a decision is made in the meantime, to allow it indefinitely.

I believe that NHS England thought the floodgates of GCA patients would open and the cost would be immense, but I believe that hasn't happened!

I'm unsure of the situation in the other countries of the UK.

It's good to read that TCZ is good for you - the same for me. Long may it continue.

[Rugger]

First of all - what good news about your scan result! That must feel so reassuring.

Secondly, I can't find an update to NHS England's Rapid Policy Statement that was issued in March 2021, extending the allocation until June. However, like SheffieldJane, I have heard 'unofficially' from Dr Mackie that March 2022 is the new date. So don't be too hard on your Consultant, as Jane could be right about Sarah Mackie's involvement. She is a Patron of PMRGCAuk - if you go to the charity's website there is a pointer to where your Consultant could contact her for verification. pmrgca.org.uk/staff_member/...

[Suzita76 in reply to Rugger]

Thanks, Rugger- I will send her that link. Hope you are doing OK? This heat is a bit much right now., but there’s always something to moan about !

[PMRpro Ambassador in reply to Suzita76]

You are all funny - a few weeks ago everyone wanted to be in Italy, Spain, Greece and wherever for the heat and the beach Regions around Rome: 30-34 through the week, Barcelona is cool, only 30-ish, Greece up to 37C ...

[Suzita76 in reply to PMRpro]

Having lived in Georgia, USA for 8 years, I know all about high heat and humidity- it took us the first year to acclimatise but you knew it would always get hot and humid every summer ( and we had air-conditioning!). Here in the UK, you just never know what’s coming next, but the high humidity makes 31 degrees seem much hotter. Floods in London last week, and just saw golf ball-sized hailstones in Essex, on the news. However, the floods in Germany and other Western European countries have been truly terrible.

[PMRpro Ambassador in reply to Suzita76]

Golfball hailstones are notable!!!! The guy who stored our caravan on Lake Garda told us about a hailstorm with a few that weighed about a kilo! Our caravan was written-off damaged by one storm on the lake itself - horizontal hail where the stones were the size of those decorative glass beads about large thumbnail size. I'd just cleared the table away and got inside when it hit - it was like being inside a drum! But that storm didn;t reach our caravan store - just 3 or 4 miles away.

[Suzita76 in reply to PMRpro]

Good grief! Georgia certainly has some extreme weather- a hurricane that brought down 6 trees in our garden, and an “ice storm” where rain froze instantly into sheets of ice and brought all the telegraph poles and wires down. We had a basement to hide in ( along with half the neighbourhood) when the hurricane sirens sounded. Just finished another Donna Leon book- she’s kept me going through the lockdowns. Many of her books mention pollution and other damage in the Venice Laguna, so I was pleased to read in the paper last weekend that the Italian government has voted to ban cruise ships. Hope it’s not to late to save the city.

[PMRpro Ambassador in reply to Suzita76]

It was the most peculiar sight when a cruise ship sailed past the end of the back street we were standing in!!

[LemonZest11 in reply to PMRpro]

A few years ago now, we had the most incredible hail storm in Perth, Western Australia. The hail stones were, quite literally, like golf balls, and all cars caught in the storm were covered in these huge dents. There were so many that insurance companies just wrote off the damaged cars, panel beaters being inundated and unable to make repairs. It is the very first time that we have actually had a “win” with an insurance company … they wrote off our car for the insured amount which happened to be more than the actual value of the car. We loved that, actually beating an insurance company in Aus is considered quite a win! As for weather, well you know all about our heat! Having said that, we have just had the wettest July in decades!

[PMRpro Ambassador in reply to LemonZest11]

Yup - happened in Munich when we lived in Erlangen, Bavaria. An anaesthetist colleague was standing on his balcony as it started and thought about putting the cars away - then realised he'd be risking his life!! For years there were cars and caravans to be seen that had even more than usual dimples on the roof - all paid out on insurance but perfectly OK otherwise so they could be driven. Bargains to be had - but the insurance stopped that. If it was paid out, the car had to be given up to the insurance company,

Think everywhere is having a damp time - look at the pictures out of China this morning. Scary,

[LemonZest11 in reply to PMRpro]

Are you a doctor PMRpro?

[PMRpro Ambassador in reply to LemonZest11]

Me? No - physiologist, same as my husband who worked a lot with medics, especially anaesthetists.

[LemonZest11 in reply to PMRpro]

Well you have the knowledge and the skills and you sure as hell help all of us out, and for that, I am truly thankful. And I am also thankful to Dorsetlady and Jane and the rest of you. Where in the hell would we be without you? I’m on a precipice, I know I will be asking for guidance again soon. Big gratitude!!!