MTX plus

So I have read on here that many of you on MTX are also on another drug working with the MTX.

Why were you given another drug and initially how long on just MTX were you before being given the top up drug.

[helixhelix]

I started with just MTX. It started to work after a few months, but I didn’t improve enough. So after about 6 months or so Hydroxy was added in. Same thing in that things got a bit better, but still not enough, so several months later Sulpha was added in. And I finally made it into remission by taking all three. This is the standard step-up approach to triple therapy. I so have quite aggressive, sero-positive RA and by the time I was diagnosed I was in a pretty bad way.

I’m now on a biologic and MTX, and the reasoning for taking MTX with it is different as MTX stops you developing resistance to the biologic.

[Hidden in reply to helixhelix]

helixhelix that is sounding how I am feeling that MTX is doing some things but I do not feel I am anywhere near remission and just stay flaring and like you sero positive. I know some seem to be given things straight away of 2 drugs but wanted to hear from someone who just started on MTX.

Thank you much apreciated as I did not understand how this worked out and can discuss with nurse this week but I know still early days ( started MTX Sept/Oct).

[Maloc97 in reply to helixhelix]

Good that we have been given the same reason for being prescribed mtx with biologic (adalimumab/Imraldi).

I've not started medication yet, awaiting nurse appointment... simply put I'm bricking it.

[helixhelix in reply to Maloc97]

Concentrate on planning all the great things you are going to do once the meds start working...

[Hidden]

I was on methotrexate for 3 months before hydroxychloroquine was added but unfortunately I was allergic to it. Did ok on just methotrexate for about 12 months then all hell broke loose. Changed to methotrexate injections and 3 months later added sulfasalazine again allergic to it and have just started Elerzi ( biologic). Methotrexate just keeps it simmering but I get too many often long flares

[Dobcross1]

Hi Deeb. I've been on just MTX for just over 12 months now. However it's not quite getting me to where I want to be - but before adding in another drug my consultant wants me to increase to the maximum dose of MTX using a stepped approach over the next months- ie just gone to 20mg x 4 weeks, then 22mg x 4 weeks then 25mg. Is this something you could consider? I know I waited on 15mg far too long before increasing to 17.5 and I think that definitely meant I suffered unnecessarily. If the new approach doesn't work I've been told I'll need to add in another DMARD too.

[AgedCrone in reply to Dobcross1]

You have a wise Consultant DC .....My rheumy increased Mtx to 25mg very swiftly...& I never needed to add another drug.

I so agreed with him.....the less drugs you pile on the better.

After all...in my mind each new drug can bring its own problems or even mess up the one drug that is doing the job...even if a bit slower than we’d like.

[Dobcross1 in reply to AgedCrone]

Thanks AC appreciate your wise words 😁

[Hidden]

thanks Dobcross1 already up to 20mg but nausea was bad so down to 17.5mg injections will be 22mg when I start in a few weeks. I have been stepped up quite regularly so was at 20mg by week 8. Will discuss this also with nurse. I dont want to be too hesitant about the treatment I want give some aggression back to the RA by making sure I am on it if not working. (think that makes sense).

[Dobcross1 in reply to Hidden]

Wow, yes I agree totally. I really regret not pushing harder for a dose increase till earlier this month (it was also a new consultant who was more 'go ahead'). I faffed about and put up with things for far too long. I'll give this a go then either add in another DMARD or change DMARD completely. I need some of your get up and go attitude - good for you and good luck😁

[Hidden in reply to Dobcross1]

I think I have learnt from this site is don't sit back push and push hard for the right treatment but working with your team rheumy.

[Dspooky01]

I was started a year ago on Naproxen and MTX plus folic acid then a fortnight later I was introduced to hydroxy (my Consultant wanted to see if I had any side effects from the MTX). My MTX has gradually been increased, now on 25mg injection and while I’m a lot better off I still have pain and stiffness especially in both wrists. My Consultant is thinking about adding Sulpha to the mix which I was a bit concerned about but reading Helix’s post perhaps I’ll give it a go.

It’s difficult to decide when I’m about 80% good, I don’t want to make things worse when I can cope with how it is. I have to say, in the 12 months since I was told I had RA I have had pretty good treatment by the NHS.

[Hidden in reply to Dspooky01]

Thanks Dspooky01 that makes sense too.

[Ruth12345]

Hi. I was on mtx for quite a few months,then put on sulphasel & hydroxy at same time then about a year later i was put on 5mg of pred as maintenance dose. I also take paracetamol& dihydrocodeine 3 to 4 times a day. Those are my usual medd. I have injections into a variety of joints as and when.

All the best.

[Hidden in reply to Ruth12345]

thanks Ruth.

[Thingybob]

Hi, I was started on sulpha initially gradually working up to 1000mg a day after 3 weeks . I always knew that the plan was to add mtx once my system was used to sulpha. My rheumy was clear that her approach was to treat RD aggressively to start with. I eventually ended up on 15mg of mtx by injection. BUT I believe I stayed at this dose for too long as I was not sure how good I should expect to feel . Recently increased to 17.5 mg and feel so much better ( apart from the post mtx nausea/brain fog ). Now I am trying to get off the steroids which the private consultant put me on initially before transferring to nhs !!! 🤔

I have a sneaky feeling that I will need to increase mtx again . Basically my 'ten pennorth' of advice is for you drive the situation. I wish my dose had been increased sooner but to be fair the nurse and rheumy only had the info I was giving them and its only since feeling more human that I realise that I should have expected more and asked for more. All the best x

[Hidden in reply to Thingybob]

Thingybob thank you as well . It was a chat with hubby last night I was 'is this it or do I ask for what else can we do' hence the question this morning.

[KittyJ in reply to Hidden]

Try not to get ahead of yourself Deeb, you’re starting injections in a few weeks so that’s your next step at the moment. That could be all you need so I wouldn’t try to guess what’s the next step after that. You can pretty much guarantee your RA journey will be different to everyone else’s so trust your rheumy and concentrate on the now and doing all the things to give mtx the best chance of helping you. There’s no quick fix so we do need to be patient and wait for the right drug (or combination) for us to have an effect. 🤞🏻the injections are the only drug you need 😊

[Dobcross1 in reply to Thingybob]

Snap! And totally agree!

[Sockknitter]

Hi Deeb, I had a similar drug pathway to Helixhelix. Started on MTX, dosage ramped up, then HCQ added, SSZ added, switched to MTX injections with higher dose. I suspect they add them one at a time so that they can pinpoint side effects. I still had disease activity and the MTX sickness on a higher dose was overwhelming so now on biosimilar and low dose MTX.

Point is that this has taken 18 months because drug effects on disease take a while to consolidate.

[Hidden in reply to Sockknitter]

Sockknitter all this is great info I just did not understand how they got to add things in or did not etc so this helps me understand the working progress with people so I feel more confident asking abut add ons.

[Hidden in reply to Hidden]

This site is a god send. I doubt I would have pushed as hard as I have without the knowledge of the members . On numerous occasions I have said I can’t wait and I won’t take steroids as they only mask the problem. Since I’ve started to fight my corner about 10 months now ( I tend to email as I want written evidence) my treatment has been much more proactive . I fear with the shortage of Rheumatologists that pushing is a necessity.

[Eiram50]

Hi Deeb

I started on MTX 20 mg and arcoxia. four weeks later a biologic ( a few change of biologics since) and about 6 months later, leflunimide was added.

[Hidden]

thank you Eiram50 I am now def pushing ahead for what more can we do.......

[helixhelix]

I was like a broken record, and every appointment was saying “is this as good as it gets? Can we do anything to improve things further?”.

[KittyJ]

Mtx wasn’t the first drug I tried but I now take it with others. It was added because the others weren’t controlling my RA.

[Hidden in reply to KittyJ]

KittyJ thank you for info.

[Hidden]

I started on MTX tablets at first, when the dose increased to 20mg I moved to Injections, Leflunomide was then added, 10mg at first then increased to 20mg. I had to stop the MTX while I had chemo. But continued to take Leflunomide. After chemo I was diagnosed with Vasculitis and given 40mg Pred daily with 5 infusions of 1 gram Methylpred. Then MTX was restarted, but only 7.5mg tablets. Current situation, 20mg Leflunomide daily for RD, 5mg Pred daily for Vasculitis and 7.5mg MTX weekly also for Vasculitis. Also have Osteoarthritis in my hips and Osteoporosis of the spine (4 fractures).

[Pinkypie2018]

Hi deeb, I started methotrexate last Feb once diagnosed and was on 15mg and after 3 months the dose was increased to 20mg. My next appointment was in October and I had swelling in my hands and wrists so rheumatologist added sulfasalazine to the mix as she thought methotrexate wasn't enough as I did have a full 6 months on the higher dose and still having problems.

[Hidden in reply to Pinkypie2018]

thank you much appreciated.

[AgedCrone]

As we keep saying everybody is different,,,,,just because X has drugs added doesn’t mean Y has to have any added.

Just listen to your rheumatologist.....he knows what he is doing.

The less drugs we take, the less likely we are to have problems with side effects.

You have only been on Mtx for a few weeks...you should be praying that it will work really well for you ....not hankering after taking more drugs.

Have patience & hopefully you will be one of the lucky ones who can manage on just one drug.

[Hidden in reply to AgedCrone]

I am very strict about not having lots of drugs I have reduced most since. Being on MTX but wanted an understanding of how people are were stepped up so I know what to be thinking about. However I don’t want to keep thinking 4 more/weeks or months and just being plateaued. I know I am lucky I have a Rheumy team I can talk with and trust.

[AgedCrone in reply to Hidden]

But as we keep saying - what suits X will not suit Y....listen to your doctors...reading what suits other people here as a matter of interest is fine but YOUR doctors know what is best for YOU.

Individually we do not know how each drug reacts to another drug......your doctor does,& he will prescribe for you relying on what you tell him & his own observances...trust him.

Most people who take many different Dmards have more medical conditions that complicate their RA/D......hence they do need to take a selection of drugs......as I said- give Mtx a fighting chance ....you say you are switching to injections ....let’s really hope that will settle you on Mtx for many years.

[Smiler53]

I'm the same as helixhelix. Triple mix over a number of months until they got "The Recipe" as they call it, that was right for me, until I eventually got into remission, my ESR was down to 14 and has stayed that way for around 9 years. But now they are wanting to reduce my meds (New Dr) - even though I was having a bit of trouble with painful hands etc.. I wasn't keen and when I told my own gp she said no. Obviously the hospital wasn't too pleased on my next visit and said they we would talk about it again at my next appointment in February!! I might give it a go this time and see what happens, I'm just worried it will upset the apple cart after all this time - you know the saying.... If it ain't broke, don't fix it!

[CarolyneJA]

I was on mthx with non biologics, then taken off over I started Remicade. Then it was added again due to wrists going.

[Bookworm55]

I was put on both mtx and hydroxychloroquine at diagnosis in Feb 2016 - and was already on prednisolone (steroid) which was then stopped gradually over the next 6 months. Both DMARDS worked very well but hydroxychloroquine was stopped after 2 years due to eye problems. Stayed on oral mtx alone for over a year until last Oct when rheumy added sulfasalazine . In all the time since diagnosis I have had very mild symptoms. Not sure if this is remission!?

[Tia53]

I started on 200mg daily Hydroxychloroquine in 2014 when 1st diagnosed which worked well. In 2016 my RA consultant advised I take a break for 6 months as I'd had no pain or flares. Unfortunately 3 months later I became extremely stressed at work which caused a huge flare.

So back on Hydroxychloroquine and I was fine again. However in Sept 2018 whilst on holiday I injured my shoulder which in turn caused a huge flare that lasted 3 months. In Dec 2018 I started on MTX injections (10mg)

I must say that my RA consultant did suggest MTX around a year previously but I declined as I was concerned about the side effects.

It took around 8 weeks for MTX to work (still take Hydroxychloroquine) and so far I've been fine.

The only side effects I get are the day after the injection are nausea and fatigue - but doesn't happen every week 😊