Tocilizumab was refused.

[Nagswoman]

Any idea why my rheumo told me that I can't have tocilizumab? She would not elaborate. MTX was making me sick.

[Sharitone]

How much pred are you on?

[Nagswoman in reply to Sharitone]

Now? 5.5mg. I started on 40mg on 9th June 2016. Got down to 2 5mg 3 or 4 times and had to go back up to 7.5mg again. I had the discussion about tocilizumab when MTX started making me sick 4 years ago or thereabouts. I had to increase the folic acid but that did not work. For quality of life I chose to scrap the MTX. It took nearly 2 years for the GGT to come down from 108 to near normal at 40.

[Sharitone in reply to Nagswoman]

I was wondering whether managing on 5.5mg might mean you're too 'good' for TCZ. I see DL and PMRpro have said something similar.

[DorsetLady PMRGCAuk volunteer]

Not funded by NICE?

And do you meet the criteria -

“Recommendations

1.1 Tocilizumab, when used with a tapering course of glucocorticoids (and when used alone after glucocorticoids), is recommended as an option for treating giant cell arteritis in adults, only if:

they have relapsing or refractory disease

they have not already had tocilizumab

tocilizumab is stopped after 1 year of uninterrupted treatment at most and

the company provides tocilizumab according to the commercial arrangement.”

[Nagswoman in reply to DorsetLady]

I need to look into refractory or relapsing. Can't answer that yet.

[DorsetLady PMRGCAuk volunteer in reply to Nagswoman]

Refractory in medicine, describes a disease or condition that does not respond to treatment.Relapsing is basically flaring.. but if that’s due to disease activity or too low a dose of steroids might depend on Rheumy view!

..and as you are down to 5.5mg (albeit more than once) it may not be considered a cost effect use of funds by others!

[PMRpro Ambassador]

I certainly wouldn't even think about TCZ at 5.5mg - at 15,5mg maybe. Even with your diagnosis of PMR/GCA/LVV.

[Nagswoman in reply to PMRpro]

It was very soon after toci was approved for use in the UK. I was still on a higher dose then. I have been on up and down preds for nearly 6 years.

[PMRpro Ambassador in reply to Nagswoman]

At the time though it wouldn't have been as long? It wasn't approved for GCA in the UK until 2017 or 2018. In the early days it was pretty difficult to get funding I think.

[PMRpro Ambassador]

It is the company that delivers the supplies to the patient and I have no doubt there is a pretty watertight agreement as to how and when and at what cost that is to be done. And the NHS will not pay more than they agreed to ...

[DorsetLady PMRGCAuk volunteer]

This is from 2018 and guess NICE had designated preferred companies producing tocilizumab...of course that may have changed since Covid..see here -

nice.org.uk/guidance/ta518/...

Different countries, different rules.

[DorsetLady PMRGCAuk volunteer]

As I said, different countries, different rules..

[Rugger]

I understood that the NHS is getting TCZ at about half price from the company that manufactures it - but I may be wrong!

[Rugger]

One thing to consider is that even if you were prescribed TCZ, it would be for only one year. I am in that situation and have to start MTX soon when my allocation of TCZ runs out.

[Moomin8 in reply to Rugger]

What????I'm on Tocilizumab and it seems to be working well for me so far 🤞Nobody has said anything about only being able to have it for a year!!! 😭I started in December 2021.

[DorsetLady PMRGCAuk volunteer in reply to Moomin8]

These are the original guidelines for TCZ forGCA patients nice.org.uk/guidance/ta518/...

The period was extended during Covid,but revert to the one year scenario wef next month (April 2022)

Discussed in this post - healthunlocked.com/pmrgcauk...

[Rugger in reply to Moomin8]

It looks as if you are on TCZ for RA, in which case, there's no restriction, I believe. The one year allocation is for Giant Cell Arteritis - breathe again, but check with your Rheumatologist to be sure!

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

Good point -I missed that,… oops!

[PMRpro Ambassador in reply to Moomin8]

RA isn't subject to the restriction - this is the PMRGCA forum.

[Moomin8 in reply to PMRpro]

Ok

[winfong]

Did you ask her why? I feel, if nothing else, she owes you an answer.

[nallufl24]

My rheumatologist wanted me to start TCZ after I relapsed and had to go back up to 40 mg pred. He wanted the injections but my insurance would only pay half which was still too expensive, however, they would pay for infusions. Doctor then said that TCZ infusions we’re not approved for GCA in US, only the injections. I asked him to try anyway because I read here that some people in US were using the infusions. He requested it from an infusion center and it was approved so I started the infusions 4 months ago. I am definitely no expert on this disease by any means. I only know what I read on this site. I don’t know what I would have done these past 8 months without all of you

[PMRpro Ambassador]

It does - that's why a range of medications work for some and not for others.

[Dressage_Diva]

I’m in the UK and went on Tocizumab in August 2019 just after NICE approved the funding. The nhs funding has now ended nationally so I have to move onto some other drug in the next few weeks which is frustrating because I’ve been so well on the Tocilizumab. The initial funding was available for 12 months but kept being extended because of covid. NICE would only approve the funding if you had a temporal artery biopsy to confirm the GCA is present, if you haven’t had that then NICE will not approve it.It’s all down to money unfortunately.

Before this I was on Leflunomide which affected my liver then methotrexate injections which made me very ill, who knows what’s in store next 😢

[PMRpro Ambassador in reply to Dressage_Diva]

Plus NICE won't approve it for longer as the company didn't present data supporting its use for an extended time improving outcome. The clinical trial was for a maximum of a year - there is some follow-up data but NICE need them to jump through the hoops ...