Can i reduce my Mtx dose?: I have had RA seronegative... - NRAS

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Can i reduce my Mtx dose?

WozzaM profile image
12 Replies

I have had RA seronegative since sept 2017 and been on 20 mg mtx injections since then. I haven’t had a flare up since. Has anyone ever actually come off their meds and stayed in remission? Was hoping I could maybe halve the dose...

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WozzaM profile image
WozzaM
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12 Replies
allanah profile image
allanah

Really sorry but this is a medical question that can only be answered by your rheumatologist.

Gnarli profile image
Gnarli

You really need to discuss this plan of action with your rheumy team. I'm thrilled your RA is under such good control and it's wonderful to hear such good news but, in your position, I wouldn't want to risk upsetting the status quo

springcross profile image
springcross

Wozza. That's really great news that MTX has worked so well for you but I agree with the others, we can't advise and you really do need to speak to your rheumy doctor. Whatever you do, you shouldn't stop it without consulting with the doctor.

nomoreheels profile image
nomoreheels

As has been said, we can't advise, it's a question for your Rheumy team. What we can say is sustained clinical remission is more common than without meds so it's unlikely you'll come off meds entirely, you never know in the future though. Don't be in a rush, your Rheumy may not do as you'd like & reduce your MTX dose by half. Usually lowering the dose more gradually is what happens. As there's no cure & the disease rarely just goes away of it's own accord you should prepare yourself for needing meds long term. It's great that you feel well enough to consider you may be able to reduce your dose though.

helixhelix profile image
helixhelix

My rheumy is quite happy with the idea of tapering down my meds. The trouble is that I can go so far, and then I it all comes creeping back.

I never managed to taper very much when I was on triple therapy. And I started biologics well over a year ago now, and have managed to drop MTX to 15mg. But that feels a bit unstable so waiting before I think about dropping further. Talk to your rheumy as they will most likely support you to reduce doses slowly as the protocol is to have you on lowest dose possible.

AgedCrone profile image
AgedCrone

Only the doctors treating you can tell you that.

Try contacting your rheumy nurse.

TPaine profile image
TPaine

Hi I was instructed last September to reduce MTX gradually from 20mg as benepali added was demonstrating remission. The guidance from rheumatology was reduce dose by 2.5mg each time and do this over a few months... I did that over 4months, down to 15mg then again to 12.5! Then at start of lockdown to 10mg and have been stable on 10mgs now for the past 4 months. You need to get clearance to do this and have bloods reviewed etc to prevent flares etc

Hope that helps

Esmereld profile image
Esmereld

All very good advice here. My rheumy says I’m a veteran now and I do my best to take the least amount I can. He’s set upper limits. But, I’ve been at it for a long, long time as have all our other friends on this site. If you can’t speak to your consultant, you might try a chat with one of the nursing team. My lot are a great bunch. Knowledgeable and of course the fewer drugs we can get away with, the better. Any reduction in drugs is going to be great but It’s a slow process and should be done gradually. To halve your dosage might not be the best thing to do. Think about it like this. You’re really well at the moment. I wonder why. You might just have the optimum dosage to get you there. Please don’t go upsetting the Apple cart. You might live to regret it. Good luck. Slowly, slowly, catchy monkey. 😂🤣

WozzaM profile image
WozzaM

Dear All. Much appreciated for those pearls of wisdom! I have spoken to my Rheumy who is going to suggest to the consultant that we reduce by 2.5mg as one of you mentioned. Fingers crossed. I just really wondered if anyone ever gets off the meds but you have all helped me understand the fuller picture. Thank you x

springcross profile image
springcross in reply to WozzaM

Good luck, hope it works out for you. x

Brushwork profile image
Brushwork

So, I agree with all the comments about reducing your dosage - that is for you and your Rheumy team to decide and discuss.

As far as coming off meds is concerned: In the early stages of my RA (seropositive), I was on and off meds for a long time. I would stop taking them and eventually would flare again. I did manage a few years of controlling it with a very strict eating plan but even that didn't stop the flares eventually returning. I have stuck with a very strict vegetarian, sugar free diet since, but do now take meds all of the time. However, I have had this for 23 years now and am free of joint damage - so far...

Bandido profile image
Bandido

I have had RA since 2006. I ramped up to 25mg MTX to manage it and stayed there for many years. They also left me on a 10mg dose of steroid for about 10 years or so. I decided to reduce the steroid slowly to zero and replace it with ibuprofen. Then because things were sometimes better I reduced the MTX and at one time had a rest from it.

I had an accident in 2017, fell down a stone staircase about 3 mtrs and smashed my ribcage, lost one rib and titanium bars screwed to others to hold me together. Initially that was misdiagnosed and I went through some kind of hell with it. I felt that I needed my overactive immune system and cut the MTX completely at times, especially before the operations and after for a bit. I am more or less self prescribing now but still chat with rheumys sometimes. Right now I am on 12.5 mg MTX and accasional ibuprofen. I also use occasional paracetamol but never exceed 1gm a day. I don't like using that and I consider it dangerous. I keep ibuprofen below 1800 a day and have a never exceed on that of 4 x 600mg tablets in a day. So I am a 17 year veteran and still ticking aith sporadic RA zero positive on quarterly blood tests.

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