Hi fellow GCA patients I would welcome your views on the following:
I was diagnosed with GCA in January last year. I had a flare during April May last year but since then have been tapering successfully to 8mg of Prednisolone in December last year. I tolerate Prednisolone quite well apart from its effect on my hair and skin.
I started to experience some unusual aches and pains in January this year when I tapered to 7 mg and my CSR markers were elevated to between 6 and 8.
On advice of my rheumatologist I increased the dose of Prednisolone to 10 mg. That got rid of the aches and pains but I started to have a bad headache. On the advice of the rheumatologist I increased again to 15mg but am still experiencing the headache although no other symptoms. Paracetamol is holding the headache at bay while I hope the new dose will do its work. I am aware I could have been experiencing steroid withdrawal symptoms so I am hoping the 15mg will work.
I have an excellent and well respected rheumatologist who has seemed very keen to get me on to Methotrexate and offered it last year as well as now. I am very reluctant to start on another toxic drug which may or may not work, has potential unpleasant side effects and won’t start working for 12 weeks.
I would be interested to hear advice from the forum about starting Methotrexate at this stage - should I just woman-up and give it a go or persist with pred? Also how long would you give the 15mg to settle my current headache situation?
Thanks very much
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Velofan
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I'm really yet to be convinced of the value of MTX at all - although there are some PMR patients who DO do brilliantly on it and you have to try it to find out if you are one! I really haven't seen much evidence of its use in GCA.
However, to have got to 10mg in barely a year is extremely good progress in GCA. The other point is that this isn't clearly a GCA flare if paracetamol is dealing with the headache. It might be - but I have doubts. What are your upper back and shoulder muscles like at present? Are they hard and tense?
Has the headache improved at all on 15mg? How is your vision? Are you having problems accommodating? (adjusting from close work to distance vision) Sinusitis?
Quite a few of us find that pred and PMR/GCA affect our focussing - SnazzyD and I just moved our specs around on our noses to save constantly paying for new glasses! But it may be time for an optician appointment.
Pred made my focal length adjustment sluggish so that if I was moving my eyes from one depth to another or moving about my eyes had to work really hard. It got better with dose reduction but it was annoying because it was forever changing.
That’s very interesting. I’ve been having the same issues but couldn’t understand why as I’ve has a recent cataract operation which has improved my distance vision really well. Following that I had a new prescription from the optician and new varifocals, which I’ve worn for nearly 30 years now. However since then looking up from reading to, say, look at the TV, has caused less than sharp vision of what I’m watching, though after a few minutes it improves. It’s quite a nuisance. I live just outside the Lake District and go walking quite a lot, and find that looking into the distance then adjusting to judge a step down on a rocky path makes me feel unsteady on my feet. I’ve just had two old pairs of glasses reglazed very cheaply, one for reading, and one for distance, to see if using single vision, particularly when I’m out and about, makes any difference.
Yes, sounds familiar. The first time I noticed it was looking up from a book into the garden and it was blurry. I was alarmed because I’m long sighted so thought my GCA was back. I also got motion sick when walking past close objects like a well because my eyes couldn’t keep up. Know what you mean about that fell walking unsteadiness! View or feet, not both.
I don't have GCA but just a regular reader on here and interested in your story so thoguht I'd chip in. Have you been offered a trail of Tocilizumab generally known as TCZ? It's a fairly new drug only been around about 5 year or so but seems to be effective for GCA in trials. There are people on it in this forum who have tried it who can share their experiences. As far as I'm aware no studies have been done using MTX against GCA so it's a matter of trial and error, it might suit or might not, it might help or it might not. So my question would be how can you tell if it is useful compared to just taking steroids alone? Rheumatologists offer it as a possible steroid sparer for people stuck on high doses of steroid. When deciding whether or not to take anything I use the mnemonic BRAN: what are the benefits, risks, alternatives and what happens if we do nothing?
There are - it does appear to reduce the rate of flares to about half and in that sense probably achieves the reduction in cumulative dose. But I don't really find them "Road to Damascus" convincing ...
Thanks for your reply and I like your logical approach to decision making! I’m not good at that! TCZ is only available here privately and my rheumatologist doesn’t work privately anyway.
I’ve been offered methotrexate as a steroid sparer.
WHo told you that? It is incorrect - if your GCA flares or you have problems tapering it is available for 1 year on the NHS and there are quite a few on the forum who have been or are on it, even in the UK. If I had got to 10mg on my own I probably would prefer to continue tapering - but if your GCA starts to flare and pred isn't enough there is no reason at all why your doctor shouldn't apply for TCZ funding.
I think we had a conversation last year where I understood one of her patients had to to be referred to a private clinician to obtain TCZ but perhaps I misunderstood, I have suspected GCA, she’s pretty sure I have it
OK - there is someone with PMR getting it privately though I don't know where. I think funding is dependent on a certain diagnosis of GCA which usually means a positive biopsy or U/S scan but things are changing so that clinician opinion is also accepted.
To get TCZ through NHS/NICE you usually have to have tried other so called ‘steroid sparers’ first, like MTX and LFT, and have what is known as as relapsing GCA - unless the rules are changing/ or have changed.
Having got to 8mg in a year, I wouldn’t say you fall into the ‘relapsing GCA’ camp.. .plus if paracetamol is helping I doubt very much the headaches are GCA.. As you say maybe steroid withdrawal…the best way to deal with that is to use one of the slower tapers we always suggest -plenty to choose from here-
I have GCA and had a year on Tocilizumab. It really did suit me and allowed me to taper without having a second flare. On my first flare I was diagnosed with LVV from a PET Scan. After the year ended I tried Methotrexate but it affected my liver function and after several attempts at lower doses, my rheumatologist abandoned the idea. I am now on Leflunomide and take one dose every other day. One a day caused too many gastrointestinal issues. This seems to be working so far and am now tapering from 5.5mg of Prednisolone to 5 using the 5 week tapering plan. Fingers crossed for both of us!
I have been on Methotrexate 20 mg once weekly since starting Prednisone in January 2024. I started Prednisone at 40 mg and have tapered down to 2mg in the past year. I am now using the "dead slow" taper method to see about tapering off completely. I feel fortunate to have been able to taper without too much ill effects and no flares. I don't know if Methotrexate is the reason - but it is working for me.Good luck on your journey to health.
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