I have been on Methotrexate for 15 weeks. 4 at 15 mg & 11 at 20mg. No improvement has anybody had a improvement after this length of time?

[Bigal45]

Methotrexate

[Hidden]

I’ve been on MTX for 4 years did ok for 2 1/2 years then disease spiralled changed to injections and 20 mg for 6 months no improvement added other demards they weren’t for me now on a biologic as well but still struggling

[Juliachoo in reply to Hidden]

Same as you but since biologics am not so bad! I found methotrexate worked well but seemed to become ineffective after 3 years until biologics were added. Still have raging fatigue & regular crash outs though less pain xxc

[Hidden in reply to Juliachoo]

Ditto. Being at an acceptable level of wellness always just out of reach x

[Boxerlady]

I've been on Methotrexate for a year along with Hydroxchloroquine. I saw some improvement on 15mg but not enough so went up to 20mg and then onto 20mg injections; finally up 25mg injections and now have started adding Sulfasalazine. I'm about 80% there now so hopefully the Sulphasalazine is the final element for me.

I'd be contacting my rheumy team to ask what they suggest. I was told by a rheumy that Hydroxchloroquine is an enabler in that it helps Methotrexate to be more effective so maybe you need to add something. Dual Dmard therapy seems to be common and even triple therapy doesn't seem to be unusual. You have to fail on 2 Dmards before you can be eligible for biologics, I think.

I have been quite proactive with pushing for improvements - with support from here.

[Hidden]

Sorry to hear mtx not kicked in. Do you take tablets?

Sometimes people are better with injections.

I was on it for years but alone it was never enough. I took it together with 2 other drugs.

I would contact your rheumatologist.

[Bigal45 in reply to Hidden]

I am on tablets rheumatologist has mentioned injections. But thinks Methotrexate may still kick in!

[Hidden in reply to Bigal45]

Oh really?

[Neonkittie17 in reply to Hidden]

Was going to say exactly the same re trying Mtx injections. That made a big difference to me swapping from tablets and less feeling nauseous too.

[Boxerlady]

I've never waited the full 12 weeks before "moving on" but obviously everyone's situation is different and no doubt different rheumys have different approaches. I'd certainly be wanting to know why he/she thinks that - are there any signs of improvement?

[Aliceeliza]

I've been on mt x for 21 weeks moving from 15mg to 20mg and now injections. I Still have pain in my hands most days and any joint can flare up at any time. Apparently less joints are involved in my hands the ones counted for a DAS score so I'm considered to be responding but I'm not sure. How much improvement should be expected? Still need painkillers most days. Not totally convinced about mt x yet and hate the hair loss

[springcross in reply to Aliceeliza]

That's what happened with me when I went up to 20 m. It really looks awful.

[Summerrain14]

You have definitely given the MTX time to be making some difference. If you haven’t done so already I would give your rheumatology team a call for some further advice. x

[Hidden]

I was started on 15mg mtx at the start of January. By week 10 I still couldn’t taper my steroids, never mind get off them: the minute I went down to 10mg, the flare symptoms just took off again and it seemed like the mtx wasn’t doing anything at all. Dose was put up to 20mg, then about 6 weeks later, when my GP said they weren’t happy to continue providing steroids without the rheum contacting them, I managed to speak to a registrar after my review was cancelled due to covid, which resulted in adding in leflunomide at week 16. About 4 weeks after the lef was added I was finally able to successfully start tapering down the pred and come off it completely, although you could argue it might have been the mtx dose increase taking effect. I personally don’t think it was, and we may now find out to some degree: I had a review a couple of weeks ago, and because things are still not under control (probably about 50% better overall), and I’m having side effects from the lef, the rheum has put me up to 25mg mtx and is switching me onto the injections. If I’m no further forward by my next review, I’m actually going to take that to mean that the mtx isn’t particularly effective in my case and discuss other options.

In your shoes, I’d definitely be asking for something else either alongside the mtx or as an alternative. The general stance for arthritis I’ve encountered and that you routinely see here is that if there’s no improvement after 12 weeks, it’s probably not the right drug for you. Everybody is different and responds well to different things, but if there’s been no improvement at all then I definitely think you’ve given the mtx on its own enough time. At the end of the day, your consultant isn’t the one having to live with the pain and discomfort of active arthritis, you are.

[Rashford20]

I’ve been on MTX for 13 weeks now I believe. I felt it has been working but the consultant said I will go on a biologic now as it hasn’t been as good as he’d hoped. I still have swollen joints and some pain so I guess that’s why, walk in the park to what I experienced 3 months ago. I’ve been going private so I don’t know if that has had an impact in the speed of moving to a biologic. He always seems to think my condition is bad anytime I see him maybe I’m just subconsciously down playing it (I broke my wrist before and took a few days going to A&E as I couldn’t be bothered waiting in the queue).

[Sheila_G]

This is a difficult one to answer. Any of the dmards or biologics will work in different ways for different people. Some will take longer than others to feel the benefit. Some won't get any benefit and will need to change to other drugs. You can only take proper advice from your Rheumatologist. There is also the fact that when we are new to this disease, we expect to be symptom free once on medication. I am afraid this will not happen. You will or can feel much better and symptoms can be reduced but you still have a serious autoimmune disease. I have had RA for 18 years. I have taken different combinations of drugs during that time but have managed very well on mxt alone for several years now. I am classed as being in remission and my life is great.....but I still have RA. I still have to take the drug and I still get flare ups but they are far more manageable now. I feel that once you get your head around this disease and you are on the right medication for you, things will be easier to cope with. I wish you well. x

[Hidden in reply to Sheila_G]

A very good reply Sheila G .When I was diagnosed I was told I could live my life as normal . You explanation is much more realistic I expected too much from myself and the drugs. The reality is different

[Sheila_G in reply to Hidden]

Thank you. It is possible to be truthful without being brutal and I think it is important to hear things from people who have experienced the same things. I don't like to sugar coat things. I don't think that is helpful. When I was expecting my first child, I remember the midwife at antenatal class telling us that childbirth wasn't painful it was uncomfortable and 37 years later I still remember those words. Needless to say, she had never had children herself. 😊x

[Bigal45 in reply to Sheila_G]

Thanks for positive reply.

[essexgirl]

Hi

I started with 10mg methx with steroid injections, then added salaz for a few weeks then upped methx to 20mg then added hydroxy then upped methx to 25mg then still having quite a few flare ups , then went onto methx injections because my rhuemy said that when you take methx in tablet form you only digest 75% of the dose as with injections you get 100% ... still not stable really as have flare ups as everyone but try not to look into it too deep and relax as stress adds towards getting flare ups , excercise & healthy eating helps and I find before I do things that are a bit strenuous , stop & think how you do it as I was straight into it at first ... ie gardening and go into things adjusting your mind because when you have ra your restrictions change

[TPaine]

I had MTX added to sulfasalazine nearly 4 years ago and had to go up to 25mgs and still not great, after 6 months of this still not controlling RA enough I then started the assessment for biologics in the autumn and ended up with the required 2 consistent DAS scores high enough to agree with my experience and then was able to start on benepali biologic in the following March. That was 2 years and 5 months ago and this made the difference. I am still on MTX as advised it supports the biologic but now down to just 10mgs a week. So to answer the question MTX was never enough for me but was a necessary step in the trial of meds, to be allowed to be considered for the biologic therapy. I now have a relatively good life with just some discomfort at times, when I push myself too much and occasional fatigue for the same reason... I work now self employed and when I rest I actually recover, rather than staying in this constant fog of fatigue I had before.

I hope you get the next steps quickly so you too can experience a better life.

Tracy.

[Bigal45 in reply to TPaine]

Thx will stay positive.

[joan31]

Since January I have been on a combo of Hydroxychloroquine and MTX as well as steroids. I found that by the start of June once I had stopped the steroids i felt it wasn’t working as well. The rheumatologist put me up to 25mg injections and ape doze of steroids until it started to work better. Maybe you just need something else added to it

[Hidden]

Yes, but I took hydroxychloroquine as well for almost 6 months. MTX was slow to work at first, but I improved so well after 6 months that I'm in remission. Don't give up yet.

[Bigal45 in reply to Hidden]

Thanks for all your reply’s greatly appreciated.