methotraxate for polymialgia

[bBarnabus]

I saw a Spanish rheumatologist today and on the basis that I have been on steroids for four and a half years, currently at 13.5 mgs deflazacort (pred equivalent about 9 or 10 mgs), she suggested I take Methotraxate once a week 10 mgs injected, so that I can reduce the steroid dose. it seems like a big gamble, given that I can live with this level of discomfort at this steroid level. It sounds like the side effects may be too risky. Any comments?

[Grammy80]

I can only relate the journey of a friend since I've never had metho. She did not want to take prednisone and opted for metho for PMR. She later was diagnosed with GCA and now has Actemra, TCZ. Her only complaint with the metho was that 'she didn't feel 100%' the next day or so. She's been dealing with this for a time now and is doing well.💞

[Spittal9]

I’ve been in methotrexate for just over a year. I haven’t had any side effects but I don’t think it’s doing any good at all. I was on 14mg of prednisolone when I saw a new Rheumatologist, who suggested I start taking it to help lower my dose of Pred. I have gone from 14mg and I’m currently on 10mg. If I go lower the pains come back. My argument against it is that I was able to achieve that the previous year without it but then had to increase due to a flare.

So, does it with for me? I don’t think so. Waiting to see the Rheumatologist to speak to him about it and I’m going to discuss it with him.

[Rugger]

I have had a year on Methotrexate (oral dose once a week) with no adverse side-effects, but arguably, to no advantage. I started it after reaching zero pred, aided by my NHS 'ration' of Tocilizumab (for GCA). The TCZ ended and I was no longer on pred but my Rheumatologist didn't want to risk leaving me on nothing at all, so MTX seemed an option. After a year, some PMR pains surfaced, so I am back on 5mg pred and have stopped the MTX.

I know that my Rheumatologist and others in the field are doing research into MTX for PMR - a double-blind, placebo-controlled trial, I believe.

The choice is yours, but it may be worth trying MTX to see if you can lower your steroid dose. You can always stop it if it doesn't agree with you. The side-effects of long-term steroid use are also a consideration.

What a juggle this is! All the best for whatever you decide.

PMR: 2016

GCA-LVV: 2019

[PMRpro Ambassador]

MTX works well for a small and probably quite specific cohort of PMR patients - trouble is, no-one has identified who they are and what might indicate success yet so it is a case of try it and see, There are no guarantees it will help you get to a lower dose and the 10mg dose she is suggesting is pretty low.

Table 3 in this study suggests that your 13.5mg is more like 11mg pred - there isn't much in the literature comparing them so this paper was written.

There is a fair bit about MTX in the FAQs, a lot from MrsNails who has been on it and up and down on pred for some time. For her it seems to get her to a lower dose of pred but there is a limit to how low she gets before flaring and having to increase pred again.

[bBarnabus in reply to PMRpro]

thanks for that . I have checked the relevant FAQs. I’m worried that I might damage my gut biome by taking it and that may create more problems than I already have. From what I read a healthy gut is crucial for dealing with autoimmune diseases like Pma. The rheumatologist is more concerned about my bone health which is in the ostopenia range. I’m not seriously I’ll so why take a form of chemotherapy?

[PMRpro Ambassador in reply to bBarnabus]

I don't think it as simple at MTX bad, no MTX good in that context if I understand this paper correctly:

ncbi.nlm.nih.gov/pmc/articl....

There are gut microbiome disturbances to be found in RA - which low dose MTX seems to regulate, And it is thought that the gut microbiome is also involved in whether it works or not. You are being offered a very low dose, even for rheumatology use, not the chemotherapy doses the oncologists use. I don't doubt the gut microbiome has an influence on PMR - and it could well be the same situation in PMR as in RA.

[bBarnabus in reply to PMRpro]

thanks very interesting reading.