methotrexate: Hi started MTX 9 weeks ago for... - NRAS

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bakingD profile image
22 Replies

Hi started MTX 9 weeks ago for inflammatory arthritis and seem to be getting worse instead of better- started at 10mg for 4 weeks then 15mg for 4 weeks and took 20mg this week

Pain and stiffness slowly worsening

Brain fog and fatigue for 1 day post injection

Is it worth continuing?I feel it’s not doing me any good

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bakingD profile image
bakingD
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22 Replies
Bootoo profile image
Bootoo

I would persevere with the 20mg dose and see how you get on. It could be that you need the higher dose but that could take a few weeks to start working. Horrible isn't it when you think nothing is working but you will get there in the end. Speak to your rheumy team or your GP they could probably give you something for the pain. Good luck. x

Dobcross1 profile image
Dobcross1

Hi, I would give it a bit longer. It took 14 weeks to work for me so there's time yet. Good luck 😁

helixhelix profile image
helixhelix

average time to work at doses of 10mg and over is 12 weeks. So try and hang on in there a bit longer.

The fact that you feel its getting worse shows that the disease is active and needs to be controlled. If you swap too soon to another drug you start again from zero as they have different mechanisms of actions.

And as the drug takes effect often the side effects diminish.

ask if you can have a short course of pred to tide you over until it works.

Haz58 profile image
Haz58 in reply tohelixhelix

I agree helix. A steroid shot or a course of predisalone is usually given me when I start new meds for RA.

AgedCrone profile image
AgedCrone

Definitely keep going..it can take anything up to 6 months to start making a difference.Methotrexate is by far one of the most successful DMards prescribed……if you give up too soon- you could end up on “hunt the Dmard for me” ……& nobody wants that search.

Try to do something you enjoy…even if it’s something as simple as chatting to a friend on the phone…sadly sitting & counting the days …only encourages anxiety.

bakingD profile image
bakingD in reply toAgedCrone

thanks for the encouragement am feeling desperate but try to go for swim most days and gently walk dog

AgedCrone profile image
AgedCrone

I considered getting out of bed a major step forward…& on the day I could move my arms enough to take off my pyjamas ..I thought I had really hit the jackpot!

That was over 20 years ago & this old crumbly is really glad I stuck to Mtx….I took it successfully for 7 years……you sound as if you are really moving in the right direction…..just give it another few weeks….then have a chat with your rheumy team & see what they suggest…on the whole they usually know if you should stick at it or move on.

RA is not a walk in the park….but step by step you will get there.

Let us know how you get on!

bakingD profile image
bakingD in reply toAgedCrone

Thank you for your encouragement it’s good to know it can take a while to work

What made you stop MTX after 7 years?

I have a v good Rheumy- his plan is to add in Plaquenil then if no joy might get onto biologics

AgedCrone profile image
AgedCrone in reply tobakingD

Nothing dramatic....it just stopped working.Looking back I was just like a kid who’d lost her lollipop….I had naïvely imagined because it worked so well - I was set for life!

It took me 16 years to advance to a Biologic & thankfully that still works well…I even got Covid over Christmas when everything was working at half pace…so I didn’t get anti virals…but thankfully, all the HooHa about oldies being at greater risk …didn’t prove true for me! I’d had worse colds!

I’m glad you have a good rheumy…..I have been with mine for 17 years now…& he has proved to be excellent….I’m just hoping he doesn’t up & retire any time soon!

bakingD profile image
bakingD in reply toAgedCrone

Wow that sounds positive thanks so much it helps to know there is some hope!Sounds like you’re doing really well🌺

My new Rheumy is v thorough after seeing a couple that weren’t so good I’ve been seen v regularly the past few weeks - my knee is affected so badly can hardly walk had op on it to tidy up cartilage back in March but lots of arthritis there and other knee starting to get stiff and sore as well as ankle- am trying to adjust to doing less now had to give up work but sounds like There will be some hope thanks again!!

bakingD profile image
bakingD in reply toAgedCrone

thank you for that am being seen regularly so that’s good

Ascidian profile image
Ascidian

Keep going if you can. Mtx is a slow burner. I had some quite noticeable improvement after about 10 weeks, but then things stalled. After 11 months (!) I suddenly felt massively better - more energy, virtually zero pain. If you haven't had ANY improvement after 12 weeks, though, I would go back to your rheumy team. I only stuck with it because I felt better than before

virtualreality profile image
virtualreality

Sorry to hear the MTX isn't kicking in yet for you. It took a good 4 months for me to see an appreciable improvement and I started on 20mg and moved to 25mg after a month. It sounds like your RA is very active and the 10mg just wasn't enough, so it's good that you've had those increments already and hopefully you'll soon start to see some benefit on the higher dose. One thing you don't mention is corticosteroids - some of us are prescribed prednisolone (or similar) as a bridging therapy to reduce inflammatory symptoms while the MTX is getting to work, as corticosteroids take effect MUCH more quickly. It's not suited to everybody, but if your doctor hasn't discussed this with you already it might be worth asking about whether it could be an option. Wishing you all the very best - the initial stages are the worst.

bakingD profile image
bakingD in reply tovirtualreality

Hi thanks for the reply- am on low dose Prednisolone and was treated for 5 years for PMR which recently seems to have flipped into full blown arthritis-will keep going on the current dose thanks for the advice v helpful

Sheila_G profile image
Sheila_G

Unfortunately mxt isn't an overnight sensation. It does take a few weeks for the full benefit to be achieved. I would continue taking it but keep rheumy informed. They are the experts.

Natasha13 profile image
Natasha13

Definitely persevere. I’m on 25ml and 2 x Plaquenil a day and once it kicks in it makes a big difference. I found the injection works much better than the tablets for me. Good luck, hope it gets better soon 😊

bakingD profile image
bakingD in reply toNatasha13

thank you very much !!

Happy5 profile image
Happy5

I was started on 20mg tablets took a while to kick usual time is 3 months I believe. Once I went on same dose injections the condition got sorted. My friend never go on with it so each one different.

Assume you're having blood tests any indication there? Never any harms to feedback to your rhuemy team.

bakingD profile image
bakingD in reply toHappy5

thanks I went straight onto injections but no sign of any improvement

My bloods are showing increasing Esr and CRP so very active illness

Happy5 profile image
Happy5 in reply tobakingD

It's possible you're like my friend who had a similar experience. His team altered his treatment after checks and discussions. Maybe the route you need to take?

All the best

bakingD profile image
bakingD in reply toHappy5

thank you for the advice we’re all so different in how we react

It takes at least 3 months …

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