I was diagnosed with PMR and GCA in 2015! I naively thought that these conditions would have “burned themselves out” some time ago, but I am still waiting! In the meantime I have a question about Methotrexate…
On the suggestion of my Rheumatologist I started taking 10mg of Methotrexate a week in 2017, having been on Prednisone since July 2015 and struggling to get below 10mg! Earlier this year I couldn’t get below 6mg of Prednisone without having symptoms that were challenging to deal with so a joint decision between myself and my Rheumatologist was to increase MTX to 15mg a week. I am applying the DSNS process and currently reducing from 4.5mg to 4mg of Prednisone without any problems…so far! It would “appear” that the increased dose of MTX has helped me to reduce to my current level of 4/4.5mg of Prednisone. I recently reread a healthunlocked article about DSNS and there is this quote “Very few patients get off pred altogether when taking the MTX”. It is this statement that is now causing me confusion, as the sole purpose of me taking MTX is to help me get off steroids altogether, but this is suggesting the contrary may occur?
I would be extremely grateful for your thoughts on this so that I can try and identify whether I should continue with MTX, or not?
Thank you and my apologies for the elongated post.
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LizMitchell
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Whatever any doctor may try to tell you, MTX is not a guarantee you will get off pred altogether. It MAY allow you to get to a lower dose of pred or it may have no effect at all. For a small cohort of patients it works brilliantly (to quote Prof Sarah Mackie in Leeds) but for the rest it doesn't live up to the hype some doctors spin. Or perhaps it is more accurate to say it won't necessarily get you off pred any faster, it might let you get away with a slightly lower dose of pred until the PMR burns out and goes into remission. But given it has its own set of adverse effects - on balance, is it worth it? It isn't for many.
is the story of one of the leading patient representatives in the charity who has tried this selection of the so-called steroid-sparers with a rather more realistic presentation of the facts, All are drugs patients have, at some point, been told they will get them off pred - none of them have for her although partly that is because leflunomide caused too much in the way of adverse effects to take a high enough dose so they are combined to keep the pred dose down.
The only steroid-sparer that is likely to really get you off pred is tocilizumab - and in the UK it isn't approved for PMR at all and only limited use for GCA. And even it only gets half of GCA patients to zero pred, half require pred ongoing because not all of the inflammation may be caused by the inflammatory substance it targets.
Hi Liz, if anecdote helps: I was on methotrexate for about two years alongside Pred ( no side effects I was aware of ) - stopped when I was given Tocilizumab for a year. Three years from start, now on 2 and a half Pred, reducing half a mg every 5-6 weeks. No idea how far I’ll get, or if I’ll ever feel what I knew to be normal. Good luck
Most people get off steroids if they are taking MTX or not. It does sound that what you read is incorrect. By taking MTX should not decrease your chances of getting off steroids.
Er, no. She quoted from DSNS, "Very few patients get off pred altogether when taking the MTX" - that is not saying you will be on steroids for life, that was saying MTX isn't necessarily going to get you off pred altogether. I wrote it when all is said and done!!!
Thank you for your response. I do really appreciate the help and advice of the more experienced members on this forum, it is invaluable!The biggest challenge in dealing with these conditions is knowing what to do for the best with regard to medication! It’s been so long for me that I am beginning to feel that this is going to be my life now! It’s a very depressing thought!
I don’t know if you are interested in gardening? We recently set up a PMR and GCA Gardening group. There are some lovely photos. facebook.com/groups/6288051...
IT is definitely worth trying methotrexate and also hydroxychloroquine. I am on 12.5 meth once per week, and daily 400mg hydroxy. It allowed me to drop from 7.5 to 2 over the last 2 months. And I feeling good, not sick at all. I plan to drop to 1 mg pred maybe next week. The rheumy told me the drug combo would get me off the pred as the goal, so far he is correct for me.
I asked my rheumatologist about the adrenals, and he said if I am at 2mg pred and no pains then they are working and I can keep reducing. I dont think methotrexate or hydroxy prevents them from working. What prevents them from working is taking too much prednisone.
Hate to have to disagree but there is a lady on the forum who felt absolutely fine at 2mg but her rheumy always checked with a synacthen test. She had absolutely no adrenal back-up function. You still need to be careful and you may need a synacthen test.
hi, I was diagnosed with PMR Jan 2019 and was around 6 months later given methotrexate as a steroid sparer, didn’t get on with this so switched to leflunomide which does have some side effects but I have successfully been off steroids now for a year so it has worked for me. I am still on leflunomide with no mention as yet of coming off them although I do have a secondary diagnosis of RA. Hope this gives you some hope.
I started MTX after I’d flared twice at around 5mg pred. It was before I discovered this website so all I had to go on was my rheumatologist’s advice. I remember it wasn’t put forward as a guaranteed solution but rather something worth trying (I was in Australia at the time). I took 20mg weekly.
About a year later I got to zero pred with no more flares.
About six months later (now back in UK) I dropped to 15mg in consultation with my GP. I was on a waiting list to see a rheumatologist but luckily my GP practice has a shared care protocol for PMR so is very well equipped.
Three months on from the drop to 15mg I finally I saw a consultant rheumatologist last week and we have dropped MTX to 10mg weekly. Going forward and all being well her plan is to drop to 5mg in about 9 months and then plan to zero.
While it would seem to have helped me, it could equally have been the case that I would have eventually got to zero pred without it, my PMR just burning itself out, I’ll never know. I also don’t know what the approach to treatment might have been if I’d been in the UK all along.
I don't have a problem with doctors wanting to try other things if it can be justified. What I DO have a major problem with is their assertion that "this drug will get you off pred". Unless it is tocilizumab/Actemra there is no guarantee, not even certainty with that either if the true be told. All the DMARDs MAY get you to a lower dose, MAY get you off altogether, but each works only for a small proportion of patients. Whether this is due to it being a particular form of PMR or because it was a misdiagnosis in the first place isn't clear. It is reasonable to try them - unless you are already under 5mg pred and then I would disagree. Or if the drug of choice makes you feel worse than PMR did in the first place or pred alone. You can cope with feeling ill for a short time if the end result is guaranteed. But months or nausea for nothing in the end? No thanks.
The big question is, do I continue with MTX or go rogue and stop taking it to see what happens? I could have been taking it for more years than I needed to, or it could have enabled me to get to 4mg? It is an impossible dilemma due to the nature of second guessing what agenda PMR and GCA has in store for me and the impact of the medication I have been taking??
Exactly. I suppose you either stay on it or negotiate a slow taper of the MTX and see what happens. Their usual idea is to get the patient to zero pred and then either leave the patient on MTX , as happens in RA, or to taper the MTX. If you feel OK on MTX, there isn;t a problem but so many DO have problems, whatever your consultant claims.
I have been fortunate that I appear, so far, to have tolerated MTX and regular blood tests are normal! Conversely, I hate the idea that I may have taken medication long term that I didn’t need! Ultimately it is my decision, but a difficult one whatever I do!
Reading PMRpro’s experience of MTX side effects, just to say I’ve had none. Like most folk I had horrid side effects on pred although they had lessened quite a bit by the time I got to 5mg. It does seem to be a very individual thing, both the course of PMR and the medication. One of the most useful things about this site is learning about others’ experience.
Thank you for your response and I couldn’t agree more with you, this support forum provides so much information, guidance and individual experiences making it the best support mechanism available!! It would be a far worse journey without it!
I’ve read your post and the responses with interest.
Background: diagnosed with PMR in May/18. Started at 20mg pred, tapered down to 9mg in about a year. Then got stuck at this dose for 2 years (multiple attempts to lower by .5mg resulted in flare/return of PMR symptoms).
I’ve I’ve been on MTX as a steroid sparer since Jan/22 and rheumy started me at 25mg which I tolerated without side effects. However, I did get sick for months last winter catching every bug that was circulating and with a diverticulitis flare. Suspected it was due to being immunocompromised having 2 strong meds onboard. Mind you I was also dealing with 2 major deaths in my family during that time so my stress levels were high at times. This caused me to hold my MTX multiple weeks, the most being 3 consecutive weeks after which PMR symptoms returned (so I suspect it IS “working”). This spring my rheumy and I decided to lower my MTX down to 15mg weekly.
I’ve managed to lower my pred from 9mg down to 6mg however some new/different symptoms have recently emerged that make me suspect my adrenals are trying to kick in. My son is also getting married the end of this month so I’ve decided to put off my taper down to 5.5 until after that event.
The hope/plan was that I’d lower my pred dose with MTX ultimately aiming to get off pred altogether. My rheumy does not rush me re tapering and is pleased I’m under 7.5mg, understanding my current goal is to get down to 5mg pred. She is ok with me continuing to drop .5mg pred using a 7-week taper and staying at my new dose as many weeks as I feel necessary. I will say she is very supportive and encouraging involving me in the decision making throughout this process. She is also open to me adjusting my MTX dose or stopping it altogether if need be (say if I put in another bad winter). She mentioned there are other medications available to me.
Like you, I do wonder how far I might have been able to lower my pred dose had I not started MTX (although I did try to lower 5 times unsuccessfully before on-boarding it). Like others, I also wonder if I will ever get off pred altogether, and, in my case, will I also get off the MTX eventually. Perhaps I have additional inflammatory disease that is also being addressed by the MTX?? (although I was tested for RA by rheumy before starting MTX and was negative).
"although I was tested for RA by rheumy before starting MTX and was negative"
But the usual tests are not definitive - there is a form called seronegative for obvious reasons. Even the ACCP can be inconclusive in a small proportion of patients.
Yes, that term sounds familiar as I think it came up during one of my conversations with her. And despite us connecting by phone every 3 months, she requested I come in once per year to have a physical assessment. During the last in-person appt (August), she (and her intern), observed and felt my fingers, wrists, lower legs, and feet.
It was my GP who diagnosed PMR as I have the classic symptoms, high CRP (elevated ESR), and I responded well to pred. Not sure if seronegative presents the same? Then again, maybe I have both??
LORA/EORA (late or elderly onset RA) can have a polymyalgic presentation and there is no criterion they have identifed yet that separates the two. It's a pain - what we need above all is a marker for PMR. I suspect the patients who do well with one or other of the DMARDs have at least some degree of inflammatory arthritis.
I have GCA. and initially was unable to reduce steroids beyond 10 mg but was able to come off entirely with aid of Methotrexate. I have now been free of steroids for 9 months. I am currently still on Methotrexate but at reduced dose of 7.5mg. My husband, a retired medic says a doctor’s reputation is made by prescribing medication before the patient would get better anyway. Who knows if this is the case with me?! Good luck!
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