Newly diagnosed this year April 2023: Can anybody offer... - NRAS

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Newly diagnosed this year April 2023

Teddyboy17 profile image
13 Replies

Can anybody offer any hope or experience of how long DMARDS take to work .

I started methotrexate in June this year at 15mg and have been slowly increasing it and currently on 22.5 but only this past week has it been 22.5 (9 tablets)

I am still experiencing symptoms mainly hands wrist and feet some days better than others but in good days still aware of it especially first thing in morning .

I have been told it’s early days and it takes a while to work and even an increase in 1 tablet can take 4-6 weeks to make a difference. Has anybody else been told this ?

Thanks

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Teddyboy17 profile image
Teddyboy17
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13 Replies
sylvi profile image
sylvi

It can take up to 12weeks to start working and for some it starts earlier. For the first 12mnths it i trial and error on getting a drug regime that will suit you. Every persone is different.xxxx

KittyJ profile image
KittyJ

yes, that may be the case with dmards, sadly there is no quick fix but the fact you are seeing some improvements are good and hopefully once you’ve been on the higher dose longer you’ll start to notice more. Fingers crossed for you.

Dobcross1 profile image
Dobcross1

Hi, Methotrexate started to work after about 12-14 weeks for me but has been a very good solution since. Good luck!

AgedCrone profile image
AgedCrone

TBH.... at a rough, guess,…give it another two months and you should be feeling the good effects…just ready for Christmas,🎄

But don’t keep thinking “when will it work”?…I’m sure that’s like watching that watched kettle that never boils!

Good luck….hope it kicks in soon!

virtualreality profile image
virtualreality

Sorry to hear it's taking so long for you to see significant benefits from the methotrexate - the early stages of treatment are the hardest because the medications can take such a long time to kick in. Sadly, as others have said, this is not unusual.

If the symptoms are causing you a lot of difficulty or pain there are some options that could possibly be discussed with your consultant, like increasing the MTX dose to 25mg, or switching to injections (this is thought to increase the effective dose because it bypasses the digestive system), or introducing short-term corticosteroids to reduce inflammatory symptoms while the DMARDs take effect, if that's suitable for you. I was started on MTX and hydroxychloroquine at the same time, so adding another medication may also be an option, although it may be that your rheumatology team want to assess the effects of MTX alone before adding another.

Do you have a rheumatology advice line or named nurse you could contact if you have concerns? Or another source of information and support (though not medical) is NRAS - they have a helpline and will understand the process of starting DMARDs and be able to offer support and general advice. Wishing you all the best, I hope you see more benefits of the medication very soon.

stbernhard profile image
stbernhard

It took about 14 weeks and some prednisolone before I could do anything at all without wrist guards. We're all very different, so there's no one answer. The NRAS website,/helpline might be a very good source of information for you. You will find the answers to many questions you may have there and some RA management tools!Good luck.

RAGuy profile image
RAGuy

You have a lot of very good advice here from everyone. The only thing I would add is don't keep waiting beyond the 3 months mark. Feedback to your RA team is important for both yourself and the treatment process.

I wish you as rapid relief as possible

Everything with RA takes time. I was put on the injection MTX when 20mg tablets wasn't helping but its hard to know what works when it all takes a long time.

It took about four months or so before it worked for me. But it did work and I’ve been in remission since. So give it time and talk to your rheumatology team if you have any concerns.

Cedrus profile image
Cedrus

You are correct - it is early days yet.

It also depends a lot on what your other RA medications are.

Some patients have a lot of side effects - like nausea, difficulty breathing , and headaches.have you been given 5mg folic acid to take the day after your weekly MTX ?

You will be reviewed f to f or online at least every 6 months and the dosage amended .

I have been taking MTX since 2018, 20 mg and folic acid regime + 2x 500mg sulfursalaline daily. it suits me but I am aware of patients that it doesn’t suit. I have been told that I may have to start a biologic DMARD suit rather than increase the MTX.

Good luck.

Blodynhaul profile image
Blodynhaul

Hi Teddy,

I'd agree with that. I remember many years ago when starting on Methotrexate (MTX) that it took at least 6 months for me to work properly, slowly but surely. Steroids & anti-inflamms alongside it, until it gradually kicked in fully. Frustrating, but you should feel improvement soon hopefully! All the years I was on MTX, it wasn't 100% effective, still had some joints flaring and for me I had a lot of chronic deep painful aching especially in hands even when the MTX was doing its job. Different for everyone. I think I was on 25mg to start, then on 20mg for a few months, then gradually reducing to a maintenance dose of 10mg for years. GOOD LUCK!

HeadInASpin profile image
HeadInASpin

I'm new to all this too and felt overwhelmed at the beginning. I only started on methotrexate in May of this year after being very poorly and waiting a while for diagnosis and treatment. It took around 14 weeks before I could really tell that it was working (which in my head felt like 14 months). I may not be back to 100% of my former self and I do get tired but I'm so much better than I was and I feel like I'm finally getting my life back. I've just returned from a lovely holiday in Whitby and, whist I couldn't climb the 199 steps to the Abbey, I did climb up the stairs to the top deck of the tourist bus that took me there. (I'm taking that as a win!) Good luck...hope you feel better soon x

spartacus101 profile image
spartacus101

I started on 20mg methotrexate in March and at the end of 3 months there had been small, gradual improvements, so for me 'kick in' meant being able to lift a bath towel, reach to hang out the washing and cut up my own food. I then switched to metoject and hydroxychloroquine because of the nausea, and at the end of six months could walk a mile to get to the shops and back. However, I have had to come off the methotrexate because of the unpredicatable vomiting and am now on leflunomide. This week I had to crawl up the stairs but experience shows things can improve. I have never felt 'normal' and have always ached but everybody is different. I hope the methotrexate is really effective for you.

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