Reducing Dose of Methotrexate

General Medications
#1

Hi all, newbie here.

I’m interested to learn other experiences of lowering methotrexate dose (or any other meds)

Back in 2017 I had my first ever flare and it was the first time I realised I had psa. Most of my joints swelled up it was pretty hideous.

After a year it was pretty much under control and through 2018 I eventually became pain-free, it was like a miracle.

Then it a fell apart after they decided to lower my dose because things going so well - from 15mg injections to 12.5 then 10mg. In spring 2019 I started to get pain again and my knees swelled up again (aswell as pain in my hips and elbows).

Fast forward to today it eventually calmed down after various steroid injections, 20mg methotrexate and Sulfasalazine. But I’ve still got pain in my knees i.e. 1.5 years since I started to get pain again after being completely pain free.

Has anyone had a better experience with lowering medication doses? My rheumy and nurse were pretty keen to lower my dose but it’s difficult to come to terms with why they did it. They were positive about lowering the dose so I trusted them that it was the right thing - unfortunately not.

Interested to know others experiences, thanks!

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#2

Hi there,

well on the face of it, it looks like your Mtx dose was lowered on the assumption that you didn’t need so much. But either you did need that amount or, basically, the fairly short-lived improvement wasn’t going to last with or without it. PsA does wax and wane regardless of the meds, which can cloud the picture.

It’s the overall picture that counts and from what you say, you’re not doing so well even on 20mg of Mtx. Mtx is not a magic bullet. Nothing’s a magic bullet. But when these traditional DMARDs such as Mtx do not result in lasting improvement then many of us here and, I would say, the majority of rheumatologists, would be thinking in terms of biologics.

How are things with swelling? So often it is swelling rather than ‘just’ pain that clinches the deal with biologics. Do you have any joint damage as far as you know?

My experience (seeing as that’s what you asked for): Mtx helped me but it wasn’t enough. Only Humira and then Imraldi have made a truly significant and lasting difference. My guess is that you are being under-treated and the actual amount of Mtx is a red herring.

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#3

Hi thanks so much for replying, great to hear other opinions.

The swelling has gone now (as far as I know) and it’s just some pain left. They’re geared up to put me on a biologic as soon as there’s any hint of symptoms returning.

The thing I find so bizarre is that I was doing so well because I was on medication. I suppose I’m thinking too simplistically - surely if it’s not broke, don’t fix it. After months of hideous swelling and as many steroid injections as they could give me they turned around and said ‘yeah sometimes it’s more difficult to get it under control when a flare comes back’. Why on earth they didn’t factor that risk in, before lowering my dose is beyond me. They thought it was good to put me on a lower dose but all that’s happened is I’ve ended up on a higher dose and additional medication.

I’m interested to know if that’s an unusual thing to happen. They were so blasé about lowering the dose and then just kinda shrugged when it backfired

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#4

Oh and joint damage has been described as nothing significant. Thanks :slight_smile:

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#5

That’s great!

And yes, I’ve been on the Mtx merry-go-round … that phase of up, down, round & round lasted far too long. I had to change rheumys in order to get better treatment but it’s good to hear that your rheumy is now thinking biologics.

Do you get a good, thorough physical examination? Whilst pain alone can be misleading - the science around pain now shows that it is a very slippery symptom - stiffness and tenderness in joints can be considered as more telling symptoms. I hope your team isn’t waiting for swelling and nothing but swelling.

Shrugging isn’t good is it? I guess I can understand doctors wanting patients on the lowest effective dose of Mtx possible, but not the shrugging if things don’t go according to plan.

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#6

Yes merry-go-round is the perfect description, you understand completely of course

Yes they examine me and ask questions etc - that all seems reasonable. After a particularly disappointing phone call with the rheumy nurse earlier this year I called my GP to relay what happened and then all of a sudden I was given an appointment straight away with the head rheumatologist in the department who switched me to her supervision. I honestly don’t know the reason behind the switch (maybe other rhemy and nurse weren’t dealing with things as they should have). As a patient so much energy is used trying to fight your own corner it’s exhausting.

That’s good to hear you’re doing better on your biologics.

Yes, fingers crossed for less shrugging in future.

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#7

Hello @FatJoints,

I’m in the UK too. Thankfully mxt didn’t like me and I really didn’t like it so I skipped that merry go round. I did sulfasalazine instead which worked for a while and then stopped and then I went onto biologics.

Whilst PsA can wax and wane my view is that if you’re feeling better at x level of medication, it’s because you’re at x level of medication. So playing with that dosage is bordering on insanity as it’s more probable that level of medication is prescisely what is ensuring you’re feeling so good.

I’m now on my 3rd biologic, the first two didn’t work. I’m finally feeling as good as I’ve ever been. However I’m certainly not going to drop the dose of my biologic or indeed stop it altogether on that basis. I take it once every 28 days and I regard it as my magic potion.

In the UK the prescription of biologics is all assessed by NICE. They need to have had two DMARDs fail for you like mxt and sulfasalazine and you need to exhibit at least 3 swollen and/or affect joints. Hence the proliferation of UK rheumys being so hung up on swelling, sadly. A decent rheumy does lots of PsARC (examining all of the 68 joints presently thought to be affected by PsA) exams though and builds up a proper picture of your disease activity which is useful to persuade NICE to fund your biologic treatment when it’s appropriate.

Glad though your rheumy appears more on the case now.

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#8

Hey, thanks for the reply :slight_smile: that’s an interesting point about the swelling. In the first flare my knees were like lava but in the recent flare my knees were full of fluid but not roasting hot, which seemed to bemuse them.

Yeah, I wish I knew enough to refuse the dose lowering. When they first mentioned it I said no chance because I’d only just got my life back after months of hideousness so was really hesitant. But as the months went on and I was back at the gym etc it seemed worth a shot. But I’ll never know if was indeed the dose lowering that caused the flare, or it would have happened anyway. I’ve read about dose reduction being a thing because it’s an opportunity to mitigate side effects and get you on the lowest dose possible, so I’d love to know if anyone has actually had success with it or it’s just some theoretical thing.

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#9

And that’s fantastic your biologic is going so well :slight_smile:

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#10

Knees full of fluid but not roasting hot? Eh? Big, fluid-filled knees would be quite enough for most rheumys to spot a flare I bet!

This is all par for the course unfortunately. I’m not dismissing your concerns or your puzzlement. It’s just that PsA so often comes with a large dollop of trial and error and very often the degree of error frustrates the hell out of us. I think … possibly … as time goes by the lower dose of Mtx won’t seem that significant to you. My bet is that it was thought that your PsA might be milder than it has turned out to be. Personally I doubt that the lowered dose has really influenced the overall course of the disease.

If PsA is intransigent, if it’s moderate to severe, then, as far as I know, biologics are the way to go.

Keep talking! I’m am not suggesting you to stop pondering, far from it and it’s great to ‘meet’ you. However I do think that a biologic could be a big step forward for you, which would be a nice outcome. So, you know, things could yet turn out well.

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#11

Oh bless you, I feel so much better reading this. x

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#12

Big fluid-filled knees :rofl::rofl::rofl: yep!

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#13

.
Sadly this is true just anyway for PsA wherever you live world wide it seems. Sadly PsA is just plain tricky to deal with. But here in the UK this is really the only way to get the NHS to work for you. I’m sure I have ‘nightmare questioning patient’ written in code all over my notes but I truly couldn’t care less. I walk into every appt for whatever it is, pretty much knowing what my options will be - what then follows is a thorough discussion of those options. I’ll have already read up on the treatment protocols, options, what’s considered to be best practice and why. It seems to work well.

Thinking about it, I’m so glad for you that the main rheumy took over your care.

I know people who maintain well on a lower dose of mxt due to the fact it appears their disease activity is such that level of mxt is right for them. But usually they find that out as they start mxt. In other words the dose was never increased in the first place because they were doing fine on the lower dose. Basically to have PsA means your immune system has gone insane so the general treatment ethos is that once it’s insane, it remains insane, hence that’s why there is very little of lowering of doses and much more of increasing doses, adding in other meds or stopping the med and simply trying something else instead. It does appear like you’ve sadly discovered that lowering doses doesn’t really help the patient unless something else like a second med is added in instead.

The sad fact is that DMARDs like mxt, sulfasalazine, leflunomide etc can have a lot more daily troublesome side effects for patients than say biologics. So there is a lot of push/pull between patients and their rheumys when on DMARDs. Biologics tend not to have such issues (although one did for me which was a surprise to me but not to my rheumy) and the dosage issue tends to be much more static so it’s easier to determine if it works or not.

All of them, both DMARDs and biologics, take simply ages to build up sufficient efficacy, the classic length of time is 12 weeks but the biologic I’m on presently has a 16 week review period. And indeed it really wasn’t till around month 8 that I felt it properly got going. Apparently with this one that’s not unusual either. So whatever, us patients do have a lot of waiting around to do, feeling pretty rotten sadly too.

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#14

Aww, thanks this makes perfect sense. Yes, they definitely mentioned trying to reduce potential side effects. The frustration of it all is as difficult to deal with as the pain and reduced mobility. I’m the same with the questions haha! You have to just go for it. Yes, the waiting and uncertainty takes it toll for sure.

It didn’t help that the rheumatology nurse said ‘I just wish we didn’t lower your dose’. Till she said that, it didn’t occur to me it was possibly the lower dose that might have triggered the second flare. It was just a difficult thing to hear - wishing doesn’t exactly help, coming from a medical professional.

Thanks for the heads up about biologics taking a bit longer, I’ll keep that in mind in case I have to switch.

I can’t convey how much your comments have helped @Poo_therapy.

And Happy Friday! :slight_smile:

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#15

I also had a bad experience with the reduction of my dose of Methotrexate.

I was taking an .8 cc injection weekly and had been in remission for a long time. When the MD suggested at a second visit that I reduce the mix I took him up on it, gradually reducing. First to .6 cc and then to .4 cc.

He had told me that the rheumies didn’t know who can go off medication and who can’t. After swelling, pain, fluid removal, and a cortisone injection, it’s very clear: I can’t.

I’m back at .8 cc but still not well controlled. Just waiting and hoping. (Isn’t there a song by that name? Maybe it’s wishing and hoping…)

#16

It’s pretty clear with PsA specialist rheumys that you don’t ‘go off’ medication simply because as you so sadly found out you can’t. The only way to come off mxt is to start another DMARD or start a biologic and even with starting a biologic they really like you to stay on a DMARD anyway, possibly at a reduced dose but having it going at the same time as a biologic is the norm.

#17

Hi @Laura108, thanks so much for sharing. So sorry to hear that, it’s so difficult to deal with knowing you were in remission - then it gets messed up I’m the same, I understand completely. Unfortunately they didn’t fully explain the risks to me and were very much encouraging to lower the dose, as if it was the best thing to do. But hey, I can’t turn back time (there’s another song lol).

I don’t have the swelling anymore ‘just’ the pain. That’s interesting you stay on a DMARD along with the biologic. I didn’t realise that either. Fingers crossed for better experiences in future x

#18

I’m at week 16 on Humira, much longer on methotrexate and Sulfasalazine. Being cautiously optimistic, I think there are subtle changes but can’t tell if it is the PsA taming down due to meds or just having a better than awful week. Fortunately I have had very few negative side effects (at least not ones I am aware of). They reduced Sulfasalazine due to headaches and I would like to get off it completely as I do not that think it is doing anything and the same type of headache is often in the back ground. But I am sleeping better and the knee pain is much less for 10 days. Foot pain came on very strong with that awful heal to arch to ball of the foot pain. So, knee pain is less, fatigue is less, new pains always cropping up and thinking maybe the Humira is trying to work but PsA still winning. One day at a time and grateful for life and pleasant moments! How are our UK friends doing with tighter Covid restrictions?

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#19

Totally relieved with the tighter restrictions frankly in the UK. The more we can keep the ‘numpty’ disbelievers inside and locked down by law - the better for everyone including those numpties too! The less the numpties catch and transmit Covid, the better for everyone, totally.

This new variant’s ability to transmit Covid now is seriously scary. Best we’re all just a home for a while, Numpty or not. We all need to survive this really don’t we? And anyway I need some numpties to banter with after - that’s for sure. :rofl:

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#20

For those living outside the UK.

nump·ty

noun

INFORMAL•BRITISH

plural noun: numpties

  1. a stupid or ineffectual person.
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