Hello, I have had a relapse of GCA and have been put on a reduction plan. Was on 40mg pred now reducing by 10mg every two weeks. I had an emergency ultrasound of temporal and axillary arteries but it was three weeks after going on 40mg of pred so my consultant radiologist did say that nothing would show up now after so much medication but he went through with the scan. He did have an interest in GCA patients and did recognise the difficulties we face. He did say that he wished he could recommend tocilizumab but to do that he needed evidence from either the scan or a temporal artery biopsy for me to qualify!!! And I had neither of those and this was the case when I was finally diagnosed as again it was weeks after I had started pred. I saw him then and he absolutely agreed with diagnosis and said the jaw claudication I suffered with was a classic symptom. He did think I should have stayed on 40mg for at least four weeks not two!
So three questions:
Has everyone else needed this evidence to get tocilizumab? And
Is the tapering at the correct level? And
Why do doctors not agree on tapering rate
Thank goodness for this site.
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Golfers1
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The original recommendation in 2018 for prescribing TCZ is as follows- [NICE ]
1 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.
It doesn’t actually say GCA must be confirmed by a positive TAB or scan… but it may do elsewhere - and it has been mentioned before. And, as far as I am aware it does need to be recommended by a rheumatologist.
As for tapering plan - personal opinion only-
you need to be on initial dose for longer than 2 weeks.4 at least.
You may be able to reduce 10mg down to 30mg, then 5mg to 20mg, then 2.5mg to 15mg… but certainly nearer 4 weeks than 2… but that’s not what the ‘official’ guidelines say.
Some follow it rigidly, the more enlightened ones follow the patient’s general state of health and the activity of the disease and their own experience over the years - that’s why they differ.
Unfortunately I followed the rheumatologist advice and only stayed on 40 mg for 2 weeks and then the same for 35mgs so I have just (3days ago)gone down to 30mgs. What should I do now?
How do you feel is the moot point…and what dose were you on when you had the relapse?
Ahh.. just seen from posts a couple of months ago you were below 5mg… sorry should have read that before I replied earlier… got confused with initial tapering plan - my apologies
So as it is a flare, then 40mg is a high dose to go back to, and you may be able to follow the rheumy’s instructions on tapering. What is the full schedule?
The full schedule is 10mgs down every 2 weeks up to 20mgs then 2.5 mg down every week until 10mg. Continue on 10 mg for 4 weeks then reduce 1mg every month up to 5 mg when he will review things.
Well you have to see how it goes…. You might find the bit between 20-10mg a tad difficult…. you’ll be at 10mg before your body/GCA has had time register each drop.. but you won’t know until you try.
Good luck… but if you stumble along the way, you must report back to Rheumy… asap!
It’s a difficult one and as DL’s quote says, “refractory disease” is a qualifier. When is a disease seen as refractory? Reducing too fast and getting a relapse is debatable but I’m not sure how much opinion is involved in judging whether the GCA is stubborn or the steroid plan too ambitious. You are very early days so I’m not sure unmanageable can be used yet if your symptoms come back.
As for tapering rate, 4 weeks seems to be the initial stint on guidelines and when they say, “….or until resolution of acute markers”, that is debatable too. Not everyone has abnormal results on anything (me included) so it isn’t a good guide. I too had been on Pred too long for the biopsy to be very useful. I was on 40mg for 6 weeks and needed every one of them. I had a hiccup after 3 weeks and didn’t absorb the Pred properly. The symptoms came racing back, so I knew this wasn’t a pointless, life changing exercise. Reducing after that was slower and in 5mg jumps such was the misery of withdrawal symptom for me as an individual. Your dose isn’t curing the GCA it”s just holding the damage at bay. You are finding the lowest effective level for you.
Tapering rates are guidelines when opinion goes into the mix. Various ideas can come out; some sound, some a tad optimistic and some barmy. The trouble is everyone is different so one taper doesn’t fit all. The most valuable aspect is flexibility and tailoring it to the patient not the spreadsheet. I ended up doing my own thing depending on how I felt in my gut, all bit wiffly waffly but it worked for me and I was off Pred in 3.5 years, with the last one 1mg and under.
TCZ itself isn’t necessarily the answer either. There are more than 1 inflammatory mediators and Pred is pretty broad spectrum. TCZ only deals with interleukin-6 which to be fair, is commonly implicated in GCA. If you happen to have others in play too, the TCZ may not be the magic bullet but allows the Pred dose to be reduced faster but not eliminated. In the UK the option to suck it and see isn’t there yet.
I wouldn't get too hung up on the inability to get TCZ - most of the people in the UK on this forum got through GCA on pred alone, And pred isn't the evil thing many doctors seem to think it is. My cumulative dose over 15 years is WAY higher than most GCA patients accumulate and mine was for a diagnosis of PMR! Doesn't appear to have done much damage really.
If the option for TCZ is there, then it is worth taking but it isn't perfect and doesn't guarantee you get off pred entirely. It also has its own adverse effects which MAY be very unpleasant and longlasting if you are the one who develops stubborn diverticulis. And it doesn't cure anything either - it is a (still) very expensive steroid-sparer. That may change within a few years but no crystal balls here.
I suspect at the moment the confirmed diagnosis of a qualifying condition is pretty non-negotiable, That may change. It certainly needs to when it is so difficult to get an ultrasound done in a timely manner.
Have you got any returning symptoms at the lower dose? Be very aware and have a low threshold for suspecting a dose is too low.
Thank you. I will be on guard for any symptoms from now on. The trouble is when I had the flare I was so unwell with visual impairment, neck pain, arm and shoulder pains plus return of occipital headache mainly and slight temporal headache plus pain behind ear that I was grateful to go up with steroid as within a day all symptoms had eased and then disappeared so felt well again. It is just so confusing that 2 consultants both have differing views on dosage and the eye consultant didn’t seem to think normal esr and crp meant very much but rheumatologist puts great store in these. I need to gain more confidence in listening to my own body and what it needs.
This is we’re this site is invaluable to all of us.
Ask 5 rheumies and you will get about 10 different views!! DL has said in the past that eye specialists are usually more reactive and err on the safe side - probably because they are more aware of the disastrous effect of visual loss. I would not be reticent about any symptoms - lean on them heavily ...
Thank you for your reply. My rheumatologist says that because my ESR and CRP were not significantly raised that the acute phase was over. He uses these as markers for all his decisions.
Well he's skating on thin ice there but mere patients are never going to win against the supposed experts. And if that is the case - how does he work with patients on TCZ? ESR/CRP become meaningless on TCZ and you CAN flare on TCZ, the clinical trials make that quite clear. You have to work with return of symptoms.
I take Kevzara, but if it had not been approved for the drug company to supply it without cost to me, my dr would have put me on probably the drug you mention or another for giant cell. I had, like you, already started prednisone so it wasn't clear, but my dr saw inflammation that he felt justified the diagnosis. As Dorsett Lady said (she's been a huge help to me!), tapering dosage is personal opinion. See how you feel. I modified my dr's plan according to advice on this forum and continue to do that. I know people for whom a fast taper works fine. For me it did until about 5 mg but now I take it slow, up it for a few days if I start to have anything resembling a syptom. I'm down to 1 mg now and feeling good. Though I don't know what will happen once off Kevzara, which will happen if the drug company stops paying for it.
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