12 months on Steroids & Methotrexate and still struggling with GCA

[Kailacobweb]

What experience do others have of Methotrexate? It was given to me when I was struggling to reduce my steroids from 30mg. Now after several months my steroids are down to 20mg but still very swollen faced and feeling yuk. My questions is what does methotrexate do? how does it work? and what problems does it cause? How do you know if your aches and pains are caused by GCA or the drugs?

[SheffieldJane]

I have resisted it, largely because of the questions you throw up. The listed side effects look quite sobering too. I will be interested to see your replies.

[PMRpro Ambassador]

There is said to be some evidence that methotrexate may be helpful in reducing flares when reducing in GCA but it seems to me that it doesn't appear to change much else, such as reducing the total dose or the speed of reduction. At least - that is what I take from this section

When should further, non-biologic immunosuppression be added to glucocorticoid therapy for GCA? (PICO 9, 10)

of the 2020 Recommendations for GCA:

academic.oup.com/rheumatolo...

And where Recommendation 8 says

"8. Conditional recommendation: MTX might be considered for GCA, in combination with a glucocorticoid taper, in patients at high risk of glucocorticoid toxicity or who relapse. There is insufficient evidence to recommend any other oral immunosuppressive agent in GCA, including azathioprine, leflunomide or mycophenolate mofetil. QoE: ++. Consensus score: 8.92."

Reading the section leading up to that (nearer the emd of the paper than the beginning) would be enough to dissuade me from mtx in GCA. But that is also based on my own personal poor experience with mtx - the only thing it achieved for me was appearance of so-called steroid adverse effects I had never experienced on pred alone! And overwhelming fatigue.

For me, with mtx I developed aches and pains that felt more like PMR not on pred than anything else I can think of and I'd had 5 years of that! I was permanently hungry and gained 2lbs in under a month - that was new. No nausea but from the second week there was the fatigue and each week it lasted longer, by week 4 I only felt well the day I was due to take the next dose at night. I bruised worse than on pred alone. And after a few days my hair fell out in clumps - and increased folic acid seemed to make no difference.

[Rimmy]

Given you have 'only' had or been diagnosed with GCA for about a year it is likely even without the Methotrexate that you would still be feeling quite unwell from the GCA - which can last several years. I see in a previous post you tapered down fast initially to 17.5mg - that seemed very fast to me so WHY your rheumy thought that adding Methotrexate to the mix so 'early' in the piece is beyond me.

I have had GCA for over three and a half years and am still tapering from 17.5mg myself after a relapse a few months ago - and this is not uncommon with GCA especially within the first couple of years. You may also need to discuss the use of Methotrexate with your rheumy again to establish if anything you are experiencing could be related to side effects (not connected with those of Prednisone.) Ultimately though you need to think more like 5 or 6 years of GCA to be out of the woods (sorry !) Others here may be able to comment more than I can from their experience of Methotrexate as a 'sparer'.

PS - I see PMRpro has just done that !

Best wishes

[FRnina]

I have both PMR and GCA. I was put on Methotrexate after 2.5 years approx. because I had a couple of flares at 7mg prednisone and got stuck at that dose. This was despite following a slow taper as recommended here. I now see that my rheumy and I were probably being way to optimistic about the rate of reduction. I never had any particularly bad side effects from Methotrexate like PMRpro: looking back though maybe it caused a lot of fatigue.

As not being able to get below 7mg pred even with Methotrexate, I was taken off the Methotrexate and put on Tocilizumab. This seems to be working well as I'm now down to 2mg pred at just over 3 years and with no flares. No bad side effects.

This illness needs a lot of patience, a lot of monitoring: it's a long haul. And it may be so one never comes off prednisone completely as is so often stated here (not a relentless reduction to zero necessarily but keeping at a 'maintaining' dose).

Also need to reduce stress as much as possible: it seemed to me my flares were linked to a stress situation.

It is this forum that has kept me informed an sane- can't thank everybody here enough.

[Sho-Sho]

I was put on methotrexate when I got stuck at 21mg of pred for GCA having started at 60mg six months earlier.

After 4 months I think I almost felt more unwell & fatigued than I had at the onset of GCA, so the Rheumatologist took me off it & I think within a month I began to feel better. Unfortunately this was before Tocilizumab had been approved by NICE for treating GCA which seems a much more effective option. - although that I think can also have side effects for some people. I have learnt to be patient & just taper very slowly, however mine doesn't seem to be in a rush to go away!

[PMRpro Ambassador in reply to Sho-Sho]

Can't say I'm surprised you got stuck at 21mg just 6 months into GCA - Dasgupta et all showed in a study that there is still histological evidence of active disease after 6 months at above 20mg.

[Sho-Sho in reply to PMRpro]

Totally agree with you - knowing what I know now 4 years later. Methotrexate was prescribed by the senior consultant at the Main Bristol hospital!

[PMRpro Ambassador in reply to Sho-Sho]

I lasted a month - but has said beforehand that I would take a holiday while we went to S Korea to a meeting. I'd never have coped with trip had I taken the mtx before we went. It took over a month before I felt better, it was a few months before the effects were gone.

[Hidden]

I have PMR only. My experience with methotrexate was not good. Side effects of extreme fatigue and pain ( as if not taking pred) led to discontinuance. Does help some, just not me. Hope it gets sorted for you. My best.

[musicality]

On Metho for quite a well. Didn't work for me, just got side effects. More fatigue on top of the Pred and PMR fatigue, hair loss, etc.