Results of our GCA and Tocilizumab Survey Published

[Fran_Benson]

Hi everyone, earlier this year we surveyed some GCA patients (members of the charity and on our forum here) who had previously been prescribed tocilizumab but had had to stop taking it at the end of the allowed period. The results clearly illustrate the unmet need for better treatment options for English patients who stop tocilizumab and then have a GCA relapse. Importantly, it brings to life the results found in TOC STOP where up to half of people with GCA had a relapse after they stopped tocilizumab.

We wrote the following article about the survey for Rheumatology Advances in Practice which is an internationally recognised rheumatology journal. It is now published and will come up on searches in Pubmed, which is the way anyone looking for research on GCA would be able to access the article anywhere in the world.

We have also paid for it to be open access so anyone can see it, to maximise its reach (this was the only way to publish it in this journal where everything is open access, but other journals make you pay for your paper to be open access too).

This article will be used as evidence in a presentation to NHS England asking for a change of their policy so people can have repeat treatment with tocilizumab if they relapse.

You can read the article here: academic.oup.com/rheumap/ar...

Special thanks to the patients who participated and to our trustee, Dr Vanessa Quick and patron, Dr Sarah Mackie for their involvement.

#GCA #GiantCellArteritis #TOCSTOP

[DorsetLady PMRGCAuk volunteer]

Thanks Fran,

Can you please add to FAQs — TCZ has its own section.

[PMRpro Ambassador]

After the results on Ozempic and heart disease, NICE and its decisions do look a bit rocky in terms of patient benefit! Hope they listen ...

[Zebedee44]

Hi Fran, have tests been done to observe flares if TCZ is given for a longer period or given a second time ?

[PMRpro Ambassador in reply to Zebedee44]

That has already been done outside the UK where it ISN'T restricted anyway and as part of the original clinical trials.

[Marypatmorgan]

Thank you for posting this. I am very interested in Tcz as a treatment for GCA. At the moment I cannot even get to see a Rheumatologist on NHS in my area, having been waiting for 4 months. I got one relayed set of instructions in January via unhelpful GP to taper me down from high dosage, but since then, nothing despite requests. Not sure if this is the right place to ask, but I am trying to see a better Rheumatologist privately to discuss alternative to just Prednisolone and I think I have found one. Are you able to advise as to their suitability please? With thanks for all that this great charity does for us sufferers 😊

[DorsetLady PMRGCAuk volunteer in reply to Marypatmorgan]

Probably better to raise a new post asking your question… and the charity doesn’t actually endorse rheumatologists, but other members may give their experiences…

[Marypatmorgan in reply to DorsetLady]

Thank you. Just finding my way around here!

[PMRpro Ambassador in reply to Marypatmorgan]

If you have GCA then you should have been referred to rheumatology as an emergency - GCA is beyond the average GP to manage. I think you will struggle to get TCZ via a private appointment - we have been told that it is not possible to have it supplied privately and it must be via the NHS system.

[Marypatmorgan in reply to PMRpro]

It’s complicated regarding my diagnosis and initial treatment. I’m struggling mentally since getting very sudden onset of both PMR & GCA whilst on vacation in the US at Christmas (very unlike my previous persona). Hence I’ve not even completed my profile yet.

I was tested and diagnosed there but put on 70mg Prednisone until I could fly back home to UK. Unfortunately, as a previously well controlled type 2 diabetic for 18 years, it flirted me right up to steroid induced hyperglycaemia and onto insulin for the first time in my life. I’ve had quite a rough time with that aspect as it’s proving very hard to control even though I’m on a very strict low carb diet.

The diabetic support where I am is also not the best I’m afraid.

In my area the wait time for Rheumatology even when marked urgent is up to 8 months of which I’ve served 4. I know from conversations with my rubbish GP (now changed) that neither he nor the Rheumatologist he’d consulted with on my behalf felt there was any other possible treatment other than Pred.

I had seen an excellent Rheumatologist in California who kindly explained everything and listed my future path on returning home. This involved Actemra (US) of course TCZ in UK.

Sadly, no professional in the UK so far wants sight of any of the very expensive and expansive tests and results from America. I just keep getting told stick to the taper and wait.

If it wasn’t for the extra stress of the SIH I think I’d be ok with that. I know I’ve no guarantees that it will leave me as I reduce and I might be stuck with it - but I desperately need to try to get my life back, a bit!

Sorry for the lengthy ramble 😬

[DorsetLady PMRGCAuk volunteer in reply to Marypatmorgan]

Sorry to hear this sorry saga... but others have manged their diabetes well on Pred.

When you feel up to it, please raise a new post/posts regarding rheumy and diabetes.. You will get answers ...

.. and we can understand the difficulty in getting NHS to accept results/treatments etc initiated in US...

[PMRpro Ambassador in reply to DorsetLady]

... or anywhere else!!!

[PMRpro Ambassador in reply to Marypatmorgan]

It isn't URGENT, it is a MEDICAL EMERGENCY!!!!! Like a heart attack or stroke. Though I imagine the get-out is "she is already on pred".

Where in the UK are you?

[Marypatmorgan in reply to PMRpro]

North West. My health authority is Wigan, Wrightington & Leigh Trust.

I have just today made an appt to see Professor Ben Parker based at the Kellgren Centre at Mcr Royal infirmary privately, to at least sit down with someone who specialises in GCA.

I was just turned down for an NHS referral to there made by my new GP last week, hence me paying to see him.

Only now am I feeling stronger, well…. enough to take charge!

[PMRpro Ambassador in reply to Marypatmorgan]

Appalling - though I bet he never saw the letter, some admin person triaged it. Ben Parker - not a name I know. Hope he's worth it.

[Marypatmorgan in reply to PMRpro]

Thank you I’ll let you know! It’s not till 21st June.

[Niblick]

I have GCA and PMR. I was on TCZ for 12 months and the prescriptions ceased as NHS funding expired. After 3 months I had a flare up. My Rheumatologist wanted to wean me off Prednisolone as it was causing spikes in my blood sugar. They suggested I inject TCZ for a further year and cease the steroids , although I am also taking Methotrexate. Currently I have to pay the NHS for the TCZ (£1030 per month) . There is a definite case for extending the 12 month current limit imposed by NICE and I believe Rheumatologists support this

[PMRpro Ambassador in reply to Niblick]

"My Rheumatologist wanted to wean me off Prednisolone as it was causing spikes in my blood sugar"

It does, yes, for all of us. It isn't a reason for weaning off pred though. But there are ways of keeping the Hba1c within a reasonable range by strictly restricting carbs and reducing the dietary contribution to BS levels. Koalajane reversed her Type 2 diabetes despite pred.

Very intrigued by the NHS being willing to supply TCZ on a private basis - one person was told it wasn't possible to obtain it privately even though they were willing to pay.

[Niblick in reply to PMRpro]

I had to do some research into this. TCZ is supplied on the NHS through an agreement between Roche, Lloyds Pharmacy and the NHS. Initially Lloyds said they would supply me privately (obviously with a prescription) at a price of around £800 per pack with a delivery charge of £60. This would however mean that that I would have to have a private Consultant which I am reluctant to do because my NHS Specialist has been absolutely brilliant (as have all her Team). She was able to arrange for the NHS Pharmacy to order the TCZ and dispense it in the Hospital Pharmacy to me at the cost previously indicated. The mark up doubtless reflects the NHS costs of storage and admin is more than reasonable in my opinion. One thing I did discover in my research, is that private prescriptions are generally marked up by around 50%. I am fortunate that I can "eat into the kids inheritance" and fund this for the time being, but do very much hope you succeed in persuading NICE to allow the HNS to fund TCZ for more than one year as there must be many people in my medical situation who cannot afford this. There is no doubt that finding alternative medication to steroids will cause less complications , such as type 2 diabetes

[PMRpro Ambassador in reply to Niblick]

My current problem is that I am on TCZ here in Italy where it isn't limited - if used for an inflammatory arthritis there is no paperwork so that is what my notes say now, I do have some peripheral arthritis (it is seen in PMR) and have had whatever it is I have for 20 years, reuiring up to 20mg pred. With TCZ I am stable on 7mg pred and about to try 2 weekly injections to see if that still works, it did a bit back for a short time. As long as I am here, no problem, but returning to the UK could be problematic - not least the time it will take to see a rheumy. Since I am alone here, I will have to come back at some point unfortunately.

What I think is disgusting is that if you have RA in the UK TCZ isn't restricted there either.