Can you 'demand' Tocilizumab for GCA?

[tweety_pie]

I was diagnosed with PMR in January 23, responded well to steroids (15mg) but quickly developed GCA symptoms (severe headache pain, blurred vision and jaw claudication) when these were reduced to 12.5mg after 3 weeks and 'normal' CRP/ESR tests. I was referred to Ambulatory care but an ultrasound showed no inflammation and more bloods only a 'marginal' increase. Steroids were increased to 40mg by the hospital but reduced to 15mg 2 days later by my appointed rheumatologist. Double vision ensued. Bit of a nightmare but finally got a GCA diagnosis in early April after a temporal biopsy (steroids raised to 60mg before biopsy). This was reduced to 55mg after seeing rheumatologist on 19 April with blood readings again 'normal'.

Please excuse the long preamble leading to my question....I'm keen to reduce the steroid weight on my system with all its delicious side effects and have been strongly recommended to request tocilizumab. However my rheumy says I can 'have' methotrexate but they are unable to prescribe tocilizumab unless I have a relapse. Not having a deal of faith in my admittedly highly overworked rheumy (the only consultant at Whittington, North London), I requested an ESR to University College Hospital. The appointment (should it happen with strike) is tomorrow. Any advice on what I can ask for as part of my treatment? In fact, any shared experience and advice going forward would be most welcome. I'm still awaiting a DEXA scan and have been told to give up on getting a PET scan although it was requested to show full extent of GCA.

Although I cannot be very exacting about this, I 'on edge' of GCA symptoms with fluctuating eye 'disturbances', increased blurring and some mild claudication in throat/tongue even before reducing to 55mg.

[PMRpro Ambassador]

I fear that "demanding" anything is likely to merely create a bad atmosphere with the doctor, and even possibly department, in question. Certainly tocilizumab was approved initially for certain criteria for relapsing GCA and I don't know if any of the criteria have changed.

After a month of high dose pred, there is next to no point in the PET-CT - and they are expensive and oversubscribed,

[tweety_pie in reply to PMRpro]

Thank you...useful to know on the PET-CT. When I write 'demand', I mean it in the gentlest of ways...it is rather to avoid 'putting my foot in it' that would be good to know if there is any clarity. It does seem the status (secondary/tertiary?)of the hospital in question plays a role. (I have just found my way to recent FAQ pages too which will help!)

[DorsetLady PMRGCAuk volunteer]

You cannot demand - you can ask nicely, but you need to meet certain criteria and Rheumy has to agree and apply on your behalf -

And this is latest from NICE -]

Recommendation

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.

1.2 This recommendation is not intended to affect treatment with tocilizumab that was started in the NHS before this guidance was published. People having treatment outside this recommendation may continue without change to the funding arrangements in place for them before this guidance was published, until they and their NHS clinician consider it appropriate to stop.

[tweety_pie]

Thank you, DorsetLady - and to you both for replying on a bank holiday....I'm unclear if all the points in 1.1 need to be satisfied, thinking probably yes - have you any idea of meaning of refractory in this context?

[PMRpro Ambassador in reply to tweety_pie]

Refractory is when the GCA symptoms don't respond to pred as expected OR the patient is unable to reduce the pred dose considerably within a reasonable time without symptoms returning.

It is actually also a BH here - but there hasn't been single sunbeam and it is cool and windy, now raining. Not even the option of sitting outside the pizzeria in the village with a Birdie (aperol spritz) since he obviously called it right and didn't open on his day off since it may be a BH but the 1st May is the Workers Holiday!

[DorsetLady PMRGCAuk volunteer in reply to tweety_pie]

No probs -like PMRpro am widowed, so time is my own most of the time. Been in garden this afternoon -very warm..

Would say, all points need to be met…

[PMRpro Ambassador in reply to DorsetLady]

You must have stolen our sun! Rubbish all over Italy today!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Makes a change - especially for a BH….

[Devoid]

unfortunately here in the U.K you have to follow a pathway to getting Toc prescribed. As in not responding or relapsing with steroids and a steroid sparer , usually methotrexate. I have always felt in my own case that I would have benefited from Toc earlier but that doesn’t seem to be the pathway here

[Smellydog9]

I can’t offer advice but I’m in a similar position to you. I’ve had GCA symptoms again over the weekend having been diagnosed over Easter. on 50mg prednisone. Due to reduce tomorrow and having bloods today. Bloods haven’t been normal and it feels like a long road. Most days I can stay cheerful but sometimes it’s not so easy. We will get there eventually.

[DorsetLady PMRGCAuk volunteer in reply to Smellydog9]

If you still have symptoms then you shouldn’t be reducing….

Looking a your first post you say you were increased to 60mg following GCA diagnosis over Easter. How long did you stay at that dose? Probably about 2weeks if you are due to reduce again tomorrow (to 40mg?).

Too fast -especially with ongoing symptoms and blood still corroborating that GCA not under control.

..you need to discuss with your doctor.

[Smellydog9 in reply to DorsetLady]

Thank you. 10 days of 60mg, 2 weeks at 50mg. Rheumatologist said she would have been happy to increase to 40 but left me at 60 as per hospital Dr in A and E. I usually get a phone call after my bloods so will probably be able to speak to someone today or tomorrow.

[DorsetLady PMRGCAuk volunteer in reply to Smellydog9]

Okay -but if you’ve had GCA symptoms again on 50mg then orfhsis need to re-evaluate. Can I ask what in particular-snd how long after you reduced to 50mg -trying to ascertain if steroid withdrawal or flare

[Smellydog9 in reply to DorsetLady]

Started with scalp tenderness and pressure over head 10 days after reducing to 50mg. Also a little jaw discomfort. Similar to symptoms over Easter although much less and I temporarily lost vision in right eye at Easter. No visual problems this time. Have seen ophthalmologist but didn’t have biopsy as he felt it wouldn’t show anything since I had been on steroids since February for PMR. X

[DorsetLady PMRGCAuk volunteer in reply to Smellydog9]

Ophthalmologist probably correct about biopsy-and they aren’t 100% anyway…

10days after reducing is just about right for a flare telling you 50mg is not quite enough…

I would be pushing for an increase to 55mg when you speak to GP -and 5mg reductions in future rather than 10mg -otherwise I fear you may find yourself in a similar duration.

I know most doctors have a downer on Pred -understandable -but being on too low dose to control your illness is counterproductive and inevitably means you end up taking more rather than less… which goes against what they want!

Please keeps us informed…

[tweety_pie in reply to Smellydog9]

There are days when it’s hard to see way forward. Today being one of them! Hope blood tests encouraging…

[Sophiestree]

I think everyone has replied to your question, but just to add, do you have any liver issues? Pre- diagnosis they found liver issues which have now resolved. That was always my response when they suggested Methotrexate as that is one of the side effects. Good luck. It's so frustrating when each person you see is adamant they 'know' what the issue is.

[tweety_pie in reply to Sophiestree]

just today heard i do have an issue with liver so will have to put my comfort glass(es) of red wine to one side!

[Sophiestree in reply to tweety_pie]

Oh no! I think red wine must help!!Whiskey not so much!

[Grammy80]

You've gotten some great input and much more helpful than mine would be since I'm in the states. I can only say that if I was continuing to have visual disturbances...does it matter really if it is a flare or withdrawal??? Visual disturbances have consequences I wouldn't want to flirt with. This is when prednisone, prednisolone, looks really good~!💞

[tweety_pie in reply to Grammy80]

Visual disturbances are indeed frightening and increased blurriness certainly had me thinking do I need more not less prednisolone. Today had first meeting with new rheumatologist who was convinced increased bouts of temporary blurriness had been brought on by being left on 60mg of prednisilone for many weeks. For the first time since PMR and GCA diagnosis, I’m feeling cared for. To date it’s just been ‘take the steroids’… whatever the side effects. Delighted to say will be put on methotrexate/Tocilizumab pathway

[DorsetLady PMRGCAuk volunteer in reply to tweety_pie]

Blurriness is a common side effect of Pred, especially at higher doses-but it is very disconcerting.

Good luck..

[Grammy80 in reply to tweety_pie]

I'm so glad you felt cared for~! Trust in our rheumatologist is a huge factor. Recently I had some jaw claudication which lasted about three hours but the fact that he wasn't concerned truly put my mind at ease and it hasn't happened since. So glad to hear you are on the pathway....💞

[tweety_pie in reply to Grammy80]

That must have been very disturbing. I think if we’ve experienced the anxiety from such symptoms, it’s natural to be on high alert. Thanks to you and everyone for support and helpful shared experiences. Makes a big difference to bring concerns here where there is so much knowledge and understanding

[Grammy80 in reply to tweety_pie]

I'm so pleased that you felt 'cared for'....that is a big factor. Recently after 3.5 years I had some jaw claudication for about three hours; then all seemed well. When my rheumatologist wasn't worried..I trusted him and my mind was at ease.💞