Continuation of Tocilizumab treatment in UK needed- Help or advice needed please.

[Suzita76]

I know not many people with LVV/ GCA in the UK are being treated with Tocilizumab ( only 250 according to NICE literature) but in the absence of any advice or help from my Rheumatology consultant, I am hoping someone on this forum could advise me.

NICE still hasn’t rethought it’s advice to clinicians on prescribing Toc. (- I saw in a post today that it has been persuaded by the NRAS to change its “ advice” regarding prescriptions for RA patients’ access to new ( expensive) biological treatment and wonder if it can be likewise be persuaded to rethink its 1 year only policy regarding Toc. (RoActemra) for just a few LVV-GCA patients for whom Prednisolone is a no- no.

I cannot tolerate Prednisolone and have been very lucky to have been on Tocilizumab for almost 2 years ( the pandemic has been good to me in this respect!).

My Large vessel arteritis was very severe when assessed by PET-CT scan in November 2018, and I finally started Tocilizumab injections 8 months later. I managed to get off all other medications in May 2020 and Tocilizumab has worked incredibly well for me, but when I run out in 4 weeks time, no one can suggest what I do.

Two weeks ago, I phoned the hospital for advice and was called back by a nurse who said she couldn’t advise me, and to email my consultant, which I did.... still no acknowledgement or reply.

It seems my only option is to raise a complaint against NICE via the Health Ombudsman (good luck with that, I hear you say!), but it most certainly seems to me that we patients (mainly elderly and female) are being discriminated against by NICE. (It surely cannot just be a matter of money, as they have recently approved treatment of children with a very expensive drug (for treating a rare degenerative condition), to the tune of over £1.79 million per patient.

I have decided to eek out my last few Toc. injections by injecting every 2 weeks instead of weekly but it would be good to be advised on whether or not this is a good idea.

Thank you for your patience and understanding- I know this is a long rant but stress it getting the better of me!

[PMRpro Ambassador]

I saw an article about the justification for that new drug - a great deal is based on QUALYS - Quality-Adjusted Life Years. Lots for a baby with a genetic disease that will lead to them requiring high level care for life - very few for an older patient whose illness generally responds to pred. Plus there are only a very few children with that disease - probably in single figures in the UK,

The follow-up studies for TCZ have shown that a lot of patients are in remission after a year on TCZ and that the remission persists for up to 2 years (on current evidence. it may be longer) and is quickly brought under control with TCZ if a relapse occurs.

[Suzita76 in reply to PMRpro]

Thank you PMRpro- I have read that follow up research ( though with LVV there is a higher rate of relapse), but as I understand it, NICE do not allow further Tocilizumab after you’ve had your years worth , so ........

[PMRpro Ambassador in reply to Suzita76]

What annoys me most is that for RA there is no such limitation. So what is special about RA compared with GCA?

And it is approved for Takayasu's arteritis - which LVV arguably parallels ...

[Chrisellie in reply to Suzita76]

You are allowed more if you relapse.

[Rugger]

I am in the same position as you, Suzita, apart from the fact that I can tolerate pred - but don't want to be on it for life! (Presently on 5mg for the past 6 months.)

I have a telephone appointment with my Rheumatologist in 3 weeks' time and will ask for her opinion and whether she can exert any influence re the situation. I will also ask her if it is just NHS England which has imposed the one year limit, as a Scottish member on this forum has unlimited prescriptions (but it may be for RA and not GCA).

[PMRpro Ambassador in reply to Rugger]

I checked with the former chair of PMRGCA Scotland - who said:"To my current knowledge the rules in Scotland have not changed. The main difference in the rules from the English approval was that the decision is that of the clinician alone without any requirement to have tried DMARDs, relapsed etc. After that there was the same 1year only stipulation. The licence was for GCA only."

She should know - she was the patient rep for all the Scottish Consortium meetings but they were told to destroy all paperwork, positively Official Secrets-worthy ...

[Rugger in reply to PMRpro]

Thanks for checking that. She would know - I have met her at meetings in Leeds.

I think you wondered if the unlimited prescriptions had been wangled through on a diagnosis of RA.

I will see what's said at my appointment next month.

[PMRpro Ambassador in reply to Rugger]

Here in Italy my rheumy said if I had RA he'd not got to request permission ... Not fair!

[PMRCanada]

Although I don’t have much to offer by way of suggestion as I have PMR (we don’t even qualify for Actemra/tcz, I imagine there may be many more in the same predicament. Perhaps you can connect with them on this site and go from there.

It astounds me how we must advocate for our health at times! Treatment that works ought to be available to us as patients. If someone were to take away my prednisone (which works well with minimum side effects for me), not sure what I’d do honestly, but I guarantee “someone” would be hearing from me.

Hoping you get a positive outcome to your quandary, sooner than later. We are here for you!

[Chrisellie]

Hi. I also had LVV GCA PMR. Started on Prednisolone and Tocilizumab weekly injections. My reduction programme and injection programme etc is attached to my profile . I was off pred and then just on injections and off injections in 12 months , just stopped. No ongoing treatment other than adcal. It is a bit nerve racking thinking of suddenly stopping something that works but assuming you have all the right signs just take the leap of faith.

I am in remission and hope you will be too.

[Katiecatweazel]

Hello Suzita, I had a year's treatment with Tocilizumab which finished in November 2020: my CRP was right down. My R started me on parallel Methotrexate before it finished, 10mg which was supposed to rise to 20mg. However I really didn't get on with MTX and took myself off it earlier this year. 2.5 tapered on Pred alone while I was on TCZ proved too low and I had to rise up and start again from 7.5mg. Still on 5 or 6mg Pred. Good luck with your campaign to extend TCZ. I have GCA/LVV in England and am a 75 year old female.

[Frewen1]

I really wish you luck in your pursuit of this treatment... I can’t get on it ever, I’m told, because apparently I tolerate Pred ( define “tolerate “...) but it does seem unfair that NICE isn’t more generous with the biologics because LVV isn’t that widespread, and yes, we are mostly over a certain age so we wouldn’t be using funds for decades ...