Starting Methotrexate when only on 4mg of Pred.

[fairy100]

Hi

Had a Rheumatology appointment today. It was a regular review but I have, since Christmas been experiencing a flare. I was on 3mg Pred but put it up initially to 5mg and after a week which I think was too short, put it down to 4mg but I am getting symptoms again.

It was suggested that I start taking Methotrexate to enable to reduce the Pred and then stop the Methotrexate. I would add that I was off Pred. for a month in December / January 2024 and only went back on it because of the stress of my brother dying. For various events that happened in 2024 (not a good year) I had only managed to get down to 3mg by December 2024. I was not given much time to think and had to get the meds from the hospital which is quite a long way from my home. I have diabetes and other health issues. I did ask about side effects and was not told of any. Imagine my shock in reading the four A4 pages of side effects provided to me by the hospital's pharmacy department included in which were interactions with insulin and other drugs I take.

My question to you lovely people is have you started Methotrexate at such a low dose of Pred? I have to say my intuition is not to take it but just reduce the Pred in the normal way after taking 5mg for a few more weeks. My husband was shocked by the number of quite serious side effects.

I look forward to hearing from you.

xxx

[DorsetLady PMRGCAuk volunteer]

Hi

in retrospect it would have been better to increase dose by 5mg not up to 5mg [usual protocol for a flare] -and hopefully that would have sorted things. So would suggest you try that now, full details in this link

healthunlocked.com/pmrgcauk...

Never been on MTX, but wouldn’t want to be adding in another when under 5mg… if you had been having difficulty tapering Pred for some time it would different..but if you can get flare under control - I say ‘not for now thank you, but I’ll keep it in mind for future’

[fairy100 in reply to DorsetLady]

Thank you for your prompt reply. It all makes sense to me. It confirms my intuition that I should not take it and I've drafted an email to the Rheumatologist I saw. It did occur to me that he maybe have been exhibiting signs of just wanting me off Pred. as soon as possible as others have experienced although I haven't had the problem before. I have been diagnosed since 2019.

Take care.

[marionofnorwich in reply to fairy100]

You sound in a similar position to me but without the suggestion of methotrexate. At around 4mg things seem more twitchy. I am just going slow and currently trying 3.5mg but just before Christmas had to go back to 5 and then 4 temporarily. I started in 2020. I would like to take methoxotrate from what I have read

[Ozziedays]

Hello, I had a couple of flares when I got down to 4.5/5mg pred (having worked down from 25mg) and after the second one I was advised to start MTX. I took 20mg weekly and continued tapering pred at 0.5mg per 4 weeks with no more flares. I got to zero pred about a year later and ceased MTX about a year after that. Like you I read the patient info leaflet for MTX and found it a bit scary. I have to say though I’d no side effects from it. It’s now over a year since I ceased, whether the MTX helped me get off the pred I don’t know, maybe I would have succeeded in my third taper down from 4.5mg, it works for some but not others and I know there are mixed views.

[PMRpro Ambassador]

If I was fine under my own steam at 5mg or less, nothing would persuade me to start MTX. Stuck at nearer 10mg or above is a very different matter and then I would almost always say try the MTX - you can stop it if you don't get on with it. Here I would want to give it a few months on my own to see what I can get to again.

If you have got to zero pred once it shows that it is unlikely that you will need more than 1 or 2mg to manage the inflammation longer term and I would rather try that first. There are no guarantees with ANY of the steroid sparers - even the ultimate biologic IL-6 inhibitors like Actemra or Kevzara, because in their case half of patients have causes of the inflammation that don't involve IL-6 and need pred for them. MTX may work brilliantly for a small number of patients but for the majority it is a moderate effect at best.

[PMRnewbie2017]

I've been on Pred for over 7 years. I have never managed to get below 2.5mg without needing to increase probably due to overshooting my optimal dose. I have just started MTX and decided I would succumb to the continued suggestion that i should for the following reasons. My father was on Pred for PMR for life.

I wouldn't be surprised if i actually have inflammatory arthritis.

I have OA in my hands and neck and MTX may help.

I'm only 66 and if the past is reflective of the future I could be on Pred for over 20years.

So far, I've had no side effects so am prepared to give it a go. It may not make a difference, but it might.

[PMRpro Ambassador in reply to PMRnewbie2017]

When it doesn't cause any adverse effects then I think it is always worth a go - and you have to try it to know. For me though I was unable to do anything for the fatigue - which really wasn't the name of the game

[fairy100 in reply to PMRpro]

Sent email to Rheumatology Dr I saw at my appointment and within 10 minutes (yes it was NHS) she was on the phone to me and she agreed that Methotrexate was not appropriate given my concerns and that I would got to 5mg for a month and then start to reduce again to see when and if the symptoms return. If I get down to nil Pred. then fine but if not I would stay on the dose that most suits my symptoms irrespective of what the bloods say. Just which I had not had to go through the unnecessary stress of the last couple of days. Thank you to everyone who replied, your support have been invaluable.

[PMRpro Ambassador in reply to fairy100]

Hallelujah!!! Sense is becoming more common! But yes - I don't think they realise how upsetting them tinkering with something that isn't really broken can be. I'd ask that to be put in writing in your notes though!!!

[DorsetLady PMRGCAuk volunteer in reply to fairy100]

Good response - but ax suggested would be good to have it on records…