Hi, I was diagnosed with PMR in May 2024 and then GCA in August 2024( I had awful jaw claudication and then double vision) GCA diagnosis was prompt and confirmed by ultrasound and 60 mg prednisolone probably saved my eyesight. I was unable to reduce the Pred without a return of symptoms ( this included 3 days of 1g methyl prednisolone infusions in September) so ended up on 60 mg prednisolone for 10 weeks. In order to allow me to taper off the steroids I commenced methotrexate injections from late October and now 10 weeks on I'm down to 17.5mg prednisolone (phew!).
latest CRP is 3 (previous one was 1 at the start of December)- thankfully all within the normal zone. In the last few days I've have tingling in the side of my face and temple tenderness- when I previously had these symptoms in mid October the Rheumatologist thought this was probably referred 'pain/sensation' from some osteoarthritis in my upper spine- and I'm seeing a physio on 2 January about this.
What I'd like to know is does the MTX give me as much protection from a GCA flare as 60mg prednisolone?
Ps Happy New Year everyone!
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SomersetJB
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I owuld say that MTX probably gives you little or no protection despite many doctors' claiming it helps reduce the dose of pred. Prof Dasgupta, the UK GCA guru, has said in the past he doesn't think MTX has any role to play in GCA. And there is increasing evidence it doesn't achieve any advantage in PMR which is where it is mainly used. I would say that with patience, you would have been able to taper to 30mg or even less by now though of course you can't be sure.
Your rheumy should be using tocilizumab/Actemra, if they want to be sure you are protected while reducing pred at that sort of pace which is faster than is used even with that drug which it is known does work. They may do so if you are struggling again, but it is limited by NICE/the NHS to a supply for a year and it is possible that you may have to "fail" MTX before it can be used, I don't know.
However - whether that CRP is still in "normal range" or not, it is showing there is an increase in inflammation. It could be anything because it is very non-specific but in the context you have to assume it is due to GCA inflammation. The correct thing to do is check the CRP again next week to see if there is a rising trend which would to be expected if it is the GCA. And preferably don't taper any further in the meantime.
Oh, oh, oh! I was consided for Tocilizumab on the suggestion of the Ophthalmic Neurologist but the Rheum consultant wanted to go for MTX. I have to confess I feel really disappointed that MTX may not be as effective as I'd hoped/thought. At least I can raise this on Thursday when I see the physio... and see where I go from there. I won't taper further and am quite tempted to go back up to 20mg pred.
I'd love to see his reasoning for using MTX - no evidence I know of that suggests it is equivalent to TCZ and if it were - there would be no NEED for TCZ at its price.
Having had GCA - and losing sight in right eye… I’d be monitoring the face and head tenderness and trying extra Pred. Rheumy might be a bit too blasé about it not being associated with GCA . He may be correct, but not totally convinced.
As for TCZ. Other cheaper options have to be tried first.
Would just say many of us pre TCZ have got through GCA on just Pred very successfully.. all my issues were pre diagnosis -not after.
The pharmacy should have been dispensing them as 60mg packs for you but asking a patient to take 60 tablets is not acceptable. The country's gone nuts ...
Most (but not all I’ll grant you) come in packs of 28 -and pharmacy/surgery should take account of that, so that they work to timescale as to when you can request next repeat prescription.
As for pharmacy saying they couldn’t obtain 20mg -rubbish.. but they may have to give more notice “up the chain”. When I was on them -mine asked for a couple of days notice… but they was when you could get them in a couple of days. Now it’s seems everyone has to wait longer - a case of Just In Time policy!
Thank you Freya, I've had good advice in the past from my consultants about varying the dose so hope they- or the specialist nurses in the rheumatology team will advise in the next few days. If I have a major change in symptoms I will go to the eye hospital- who were amazing when I was diagnosed in August. In the meantime I've upped my dose to 20mg. Happy New Year
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