Methotrexate to get of Prednisolone

[Mamamia21]

I have just seen a new Rhemy and she is concerned by long term steroid use for what was originally diagnosed as PMR and now 5 years later is still undiagnosed. I seem to get down to 8mg ok and then struggle and start to yoyo around 10mg. This is an improvement on the 15mg I used to be on.

Anyway she now wants me down to 5mg before she will do any more tests and I have agreed that I will continue with my slow taper and hope that the MRI and my getting down to 5mg converge at some point. However, she wants me to take Methotrexate to help me come off the steroids. I noticed that taking them when you had been recently vaccinated was not good so spoke to my doctor who advised waiting till I had had my second AstraZencia Vaccine plus 2 weeks. I took the opportunity to discuss whether she thought I should go on Methotrexate and she told me I was naive to think that I could reduce to 5mg, given my history on steroids, without Methotrexate.

I have read all the previous threads on here about Methotrexate and it sounds like a scary drug. I don't want to add more and wonder what people thought about the advice I am being given. Am I naive?

[PMRpro Ambassador]

I think she is naive to be assuring you that you WILL be able to reduce the dose to 5mg using MTX. There are no guarantees as MrsNails' story of her MTX journey shows and she is far more persistent than I was - the fatigue that developed in the first month was intolerable,

I could barely put one foot in front of the other. My hair fell out in clumps within a few days, I felt worse in terms of aches and pains than I had with unmanaged PMR, was constantly hungry and gained a kilo in 4 weeks. The MTX caused/increased pred side effects which is a known effect - it MIGHT have lessened the dose had I been able to put up with it but I couldn't face it. It also worsened by atrial fibrillation and I'm pretty sure it was the origin of the bradycardia episodes that eventually had to be sorted with a pacemaker.

It is probably worth trying since a lot of people do have few adverse effects but even in RA where it is a first line therapy, a third of patients find it helps, a third find it has no effect and the rest can't take the side effects. Apparently rheumatologists aren't aware of these figures which presumably is why they still insist it is so wonderful and preferable to pred!

[tangocharlie]

Rheumatologists seem to think MTX will work for PMR as they use it on other things, as PMRPro explains very well above . How come you are still undiagnosed re PMR? 8mg of Pred is not that high, and if it's working well for you I'd be tempted to carry on and reduce as and when and only if the underlying inflammation goes down, otherwise it is pointless trying to reduce as you end up yo-yoing or in my experience significantly worse off as the inflammation gets worse if not adequately controlled. OTOH you might be someone for whom MTX works as a steroid-sparer and you don't know until you try. Tricky.

[Mamamia21 in reply to tangocharlie]

Still undiagnosed as all the Rheumys I've seen believe I was too young at 47.... I know! The only thing that stops the pain is steroids and I believe that is what I have but as you can't diagnose it I seem to be going round in circles. They thought I had axial spondyloarthritis but MRI was inconclusive so now going down the route of possibly psoriasis arthritis as I have mild psoriasis.

I am tempted to see if I can get lower by going down even slower, which might make them happy. I think I have until August before I see anyone again, so will try a half mg reduction between 8 and 7.5 to see if I can get to 7mg, as that is where I have the most problems... I still have neck pain and what seems like bursitis in my shoulder but apart from that, I feel ok. I am being told that I can't now have my MRI for my neck as apparently, it won't show anything with the 'high' steroids I am on...

Will make a decision about MTX in August... At least that gives me something to work towards.

[tangocharlie in reply to Mamamia21]

They gave me both those diagnoses too as they said I was too young at 51 to have PMR, but both were wrong. However, I think if I'm right but PMRPro would know, that if it is psoriatic arthritis or something similar rather than PMR then DMARDS such as MTX would work on it so that's maybe another reason to try it? It didn't work for me, I had breathing problems almost instantly so was taken off it.

[PMRpro Ambassador in reply to Mamamia21]

I was having those two diagnoses pushed at me with the rheumy I saw despite classic PMR symptoms and response to pred and absolutely no sign of either. The doctors I see here don't doubt it is PMR - or was originally at least!

Yes, DMARDs should work for them - but none of the DMARDs, whether conventional or biologic work equally well for everyone and as I say, MTX doesn't work for everyone there either, As I also say, possibly worth the try but there is no guarantee they will get you off pred altogether so they shouldn't lead patients to believe that. I have a friend on leflunomide. Initially it was wonderful, she got off pred altogether whereas with MTX she'd got a couple of mg lower, to about 7 or 8mg. Then she developed peripheral neuropathy, including tremor, so stopped that and was back up to 20mg pred. She has tried lower doses of LEF, didn't work. had a flare, back on higher LEF and lower pred but still 5mg where she is staying. That's after a couple of years of messing about. I suspect she is in denial about the peripheral neuropathy.

[MrsNails]

Hi Have attached My Story - it’s not an endorsement of MTX it is just literally My Story

healthunlocked.com/pmrgcauk...

[Marijo1951]

I've been on prednisolone since July 2017 and on Methotrexate since December 2017. It was prescribed at the time as I couldn't get below 25 mg of pred without having a flare up of GCA symptoms. I haven't had any really bad side effects except when I gashed my leg open and it took ages to heal - somebody should have told me to stop taking MTX while it was mending, but nobody did. My advice is always to take it at night as I found that taking it during the day knocked me out and I had to lie on the sofa for the rest of the day.

As to whether it has really helped me to reduce my pred intake, I don't know. It's taken me a long time to get down to my current dosage of 5.5 mg per day. I just can't say whether it would have taken me far longer without MTX.

When I had my anti-Covid jabs (Oxford AZ), I did ask if I should stop taking MTX for a while, but was told that wasn't necessary.

[HappyDiamonds]

I started MTX by injection on Tuesday, Wednesday I was wiped out and found I was walking/shuffling like Hercule Poirot on TV 😀. Thursday was fine though and this afternoon I have walked my Labrador for 6 miles. Very early days of course but no other side effects so far, fingers crossed it stays that way. I had resisted MTX since my Rheumy first suggested it last September but after a GCA flare and suffering side effects from a large increase in Steroids decided to give it a try. All I can add is that I think you will know when the time has come for you to try, if you don't try it you will never know. Rheumy did say it works for 70% of people and the majority of the remaining 30% usually give up because it doesn't work for them not because of side effects. But she would say that wouldn't she 😏

[MrsNails in reply to HappyDiamonds]

Good Luck HD you can always PM if you have any questions....

I’ve just changed my day, as we generally have Charlotte on a Friday (Bubbled with her) Daddy Works from Home, Mummy’s not well so l’m having my MTX from today on a Friday as l generally Chill on a Saturday after having Charlotte so thought l could combine the two test days into one 🙏🏼

[HappyDiamonds in reply to MrsNails]

Thank you Mrs Nails that is kind of you. I chose Tuesdays because my dog goes to doggie play school Wednesday mornings and comes home tired out so is happy to cuddle with me on the sofa after that. Was told if I want to change my day at any time I have to delay by a day and not bring it forward. Really hoping this works for me.

[Mamamia21]

Thanks for all your replies and advice! I will hang fire for now... I know it is an option so will make a decision if this latest taper stops working I think. It is good to know that there are options 🙂.

[Telian in reply to Mamamia21]

As already said you’ll know if the time is right or not. Good luck.

[Coffeebeans]

Hello Mamamia21

I've just gone onto MTX by injection, three weeks in now. I don't know if it's helping yet, need to give it longer but the side effects aren't too bad for me. Some nausea' tiredness the day after and ok otherwise.

For me, I'll only stay on it if it helps me reduce which for now we don't know.

When you got to 7mg before did you drop by a whole mg or did you go very slowly or half a tablet? These things could make a difference.

[Mamamia21 in reply to Coffeebeans]

Thanks Coffeebeans, it is good to hear how you are getting on. I hope it works for you! Last time I tried to go down by 1mg slowly over 5 weeks. This time I am going to try .5mg and see if that helps. I may even do it over 7 weeks.

[Coffeebeans in reply to Mamamia21]

You do sound like you took it steady but slower the better if it stops a flare. Wishing you better luck this time. At least you have some time to think about it.

[Telian in reply to Mamamia21]

That’s all I can do .5mg over 7 weeks then stay for a week or two before next reduction. Even then is tricky- harder for me second time around.