I was diagnosed with GCA in 2020 and prescribed Pred. I reduced to nothing in summer 2022 but had a GCA flare with some PMR symptoms and high blood markers. Rheumy put me back on 5mgs and I then reduced to 2mgs over 6 months. In January I was getting head and neck pain and high inflammation markers. Rheumy put me on 40mgs reducing quickly to 15 now (March). My inflammation markers are now normal. He is recommending Methotrexate but the side effects sound horrible. My current side effects with Pred are very fragile skin and a loss of muscle tone but otherwise can do walks of a couple of miles and other normal stuff. What should I consider to help me make this decision? I don’t have any details yet. His letter usually comes a couple of weeks after seeing him.
Shall I change from Pred to Methotrexate? - PMRGCAuk
Shall I change from Pred to Methotrexate?
You don’t usually change from Pred to MTX - but add it in to help you reduce the Pred more quickly [well that’s the idea].
But as you’ve only had GCA since 2020 I would say you have reduced too quickly in the past which is why you flared more than once [average is around 4 years] - so if you can reduce more slowly this time around, I wouldn’t be adding in another drug unless it was absolutely necessary.
It isn't a case of swapping from pred to MTX - you take them together and, for some people, it allows you to get to a lower dose of pred. It doesn't work for everyone and while some are able to take it without adverse effects, for others it is intolerable. It is worth trying perhaps - you might be the lucky one - but Prof Dasgupta, the UK guru on GCA, is of the opinion that MTX doesn't really have a role to play in GCA and very rarely works to get patients off pred.
If you were able get to 5mg on your own I would personally opt for that first - you aren't heading relentlessly for zero but for the lowest effective dose. Whatever any doctor may try to make out, GCA (and PMR) rarely only last 2 years and you would probably have been OK if you had not rushed off pred.
I had my two monthly appointment with my rheumatologist yesterday and, for once, he was quite approachable. He asked me how long I'd been on prednisolone (don't think he reads my notes before a visit). When I said 3 years in October this year, he said that as my blood tests were consistently good I could drop from 7.5mg to 5mg without tapering (!!). I've mentioned this before in another post. I must have been feeling very brave as I said that I couldn't do that but I would try my own taper and see if I can get down to 5mg by October. I confirmed with him that if I had a flare I'd go back up to 7.5mg for a while. He agreed. This aside I asked him about Methotrexate because I was concerned at one time that he would prescribe this for me. He has the same opinion as Prof Dasgupta and wouldn't recommend them. But then again he does have very fixed views, and he must have been feeling very benevolent towards me yesterday!
What bit escapes them that a miss is as good as a mile? Yes, 7.5mg has been enough - doesn't mean that even 7mg will be though! It is the future that matters, not history ...
Hi, I started taking 15mg of methotrexate 4 weeks ago, very reluctantly. So far, it had been ok. Last week was my increased dose to 20mg but it impacted my gastritis too much. Rheumy nurse advised to go back to lower dose which had not affected me too badly - just low level nausea for 2 days after taking it, a bit like morning sickness and bearable considering all we have been through. No noticeable hair loss yet. Taking dose on Monday and feel exceptionally tired on Weds and into Thurs. Having said that, I managed a 2.5 mile walk yesterday. I am switching to metoject next week because I don’t want it to exacerbate pre existing stomach issues. I am reducing pred from 25 at xmas (for a flare) to 18 currently. I was watching some videos on Youtube today, evidence suggests moderate improvements in terms of flares using MTX for some people with GCA and not everyone sees any benefits. I am hoping I am one of the few 🤞🏼. One of the doctors in the video said that patients tend to panic when they hear it is a chemo drug but explained the dose is incredibly low and only once a week - bit like being offered 2 paracetamol weekly as opposed to 500 he said. My own rheumatologist told me she gets good results with her GCA patients who use MTX in terms of reducing symptoms and reducing pred quicker. So far, this has been the case for me BUT it is very early days yet and my symptoms previously flared each time at around17/16mg and I have not reached that point yet. My inflammatory markers have always been normal. Hope this gives a balanced view from another ‘newbie’, I will update my journey again. I am sure some of the experts on here will offer some support too. Good luck and let us know how you get on, will be interested to see what your experience is.
I take MXT and have never had any problems except for some fatigue the day after I take it. I take Folic acid 5mg everyday except MXT day.
I take methotrexate and after a bad couple of weeks am pretty much fine on it. I took as alternative to steroids and worked well in bringing down markers and stopping pain. I now take actemra as well and have reduced the methotrexate....pain-free and back to normal activity.....Good luck
Hi Agavegirl, sorry, I’m coming a bit late to this. I have PMR and GCA/LVV and was prescribed Actemra which worked miracles for me, with little side-effects. As my allocation came to an end, my Rheumatologist wanted me to try methotrexate. After reading widely and listening to all the advice on here, I decided against it and to try to stay on Actemra, and I have been able to. I am at my 4th week at 0mg pred, after a very slow, and I mean VERY slow taper. It doesn’t work for everyone, but at least the side-effects are minimal for most. I’m hopeful of continued success but, as we know, nothing is guaranteed with these diseases. Perhaps take the advice of the experts above who suggested a slower taper without metho. 🤞 for you.
Thanks Lemonzest11. My rheumy hasn’t mentioned Actemra. I’ll ask him about it.
PMRpro is on it too, she's making steady progress. It's worth the question.
PMRpro seems to be stuck ... Had to give up with 6mg. hoping 7mg will do once I sort this out
But you haven't been here before ... so good, now take your own good advice. 😘
It was OK at first, bit more achey but that could be other things. Then the other night I struggled to stand up from the sofa without help which I have never not been able to do and can't just get up and walk, Sod that for a game of conkers!!!! Feel so much better having added 5mg! So that will be something to discuss next time ...
And you think that was due to tcx? Or low dose of pred? Such a bug#er!!
Low dose of pred, We know that GCA has 3 mechanisms for the inflammation and for half of patients TCZ gets them to lower pred but not no pred, Since there are obviously different sorts of PMR, it is likely there are other mechanisms for the inflammation there too where TCZ won't have an effect.
It would be worth asking your Rheumatologist about Tocilizumab, bearing in mind that the NHS has 'rationed' us to 52 weeks' treatment for GCA. It enabled me to get to zero pred, after which my Rheumatologist started me on MTX alone. I had no problems with side-effects, but didn't feel as well as I did on TCZ. After 8 months of just MTX, PMR symptoms started to return and my inflammation markers were rising, so I am now back on 5mg pred and have discontinued the MTX. You are so much earlier on your 'journey' and if I were you, I would stick with pred for the time being.
PMR: 2016
GCA-LVV: 2019
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