Stopped Methotrexate...: I was diagnosed last summer... - NRAS

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Stopped Methotrexate...

hope-always316 profile image
8 Replies

I was diagnosed last summer with Reactive Arthritis and recently went from 20mg down to 15mg orally (been on MTX for a year) as my blood checks were all good (so on paper mtx was working for me), but I felt recently that it was doing other things in me; unexplained anxiety, tearfulness, horrendous fatigue, even depression if that's possible etc, so when I was starting to have small flare ups too. I felt like something needed to change as it felt as if I was on 'too much' MTX and my body is trying to sort itself out. Does that make any sense?

The upshot is, I last took MTX on Thursday 28th Sept (1.5 weeks ago) - on no other drugs at all. I feel ok so far - just the same but clear-headed and much less anxious. But I wake up each day bracing myself for the joint pain to be worse. What is the timescale for pain potentially increasing if the MTX was in fact doing a decent job? What's the half-life of it being in my system when it took 8 weeks to kick in?

My appointment as usual was so brief I didn't get to ask all these questions, so any experience you can share would be very welcome.

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hope-always316
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8 Replies

Hi these tablets do help some people.they can horrendous they did not work for me and I felt tired etc for more than 6 months convinced oh was the methotrexate .rumatologist not keen to give me these kind medication unless inflammation in blood .he basic saying naproxen and pain killers the WAY AHEAD and physiotherapy.they are terrible drugs .See if you can the other option

helixhelix profile image
helixhelix

The half life of MTX is short, so it will be put of your body in days. But it will have really diminished the activity of your RA so it will take weeks, months, and sometimes even years to resurface. If you are very lucky (and no reason why you shouldn't be!) and especially with reactive arthritis you may go into a permanent remisssion even. Here's hoping!

hope-always316 profile image
hope-always316 in reply tohelixhelix

Thank you! I really do hope so. Diet and exercise definitely helping too.

Entero profile image
Entero

Hi, I’ve just stopped Mtx because of adverse side effects too. I still have some pain but it’s very manageable and just felt the “cure” was worse than the illness. I take hydroxy as well but am still concerned about what might happen without it. Like Helixhelix suggests I’m hoping for the best. My Rheumatologist supported me coming off it and if I do flare then we’ll go back to the drawing board. I figure better that than certain misery every week. Fingers crossed for you.

Anitasmith profile image
Anitasmith

Same here stopped my sulfasalazine and prednisone by myself 2,5 weeks ago.. was too much side effects anxiety, couldn't sleep at all etc. feeling much better now. I have rheumatologist tomorrow and my blood work was same no too much increas inflammation. Trying to be without medication will see

Lizbain1 profile image
Lizbain1

Those of you that have stopped are you in the normal crp range or do you have a little inflammation... Just curious

hope-always316 profile image
hope-always316 in reply toLizbain1

Hi, my ESR (inflammation) levels are currently within normal range. I can feel inflammation in several places in my body (where I typically flare) but it is manageable. I will have my bloods done again in 2 weeks (4 weeks off MTX) to see if the inflammation rises.

Entero profile image
Entero in reply toLizbain1

Hi lizbain, I’m one of those anomalies where my inflammation barely registers in my bloods. My symptoms are very much reduced atm but we’re not sure if that’s due to the Mtx or the steroid shots I’ve had throughout the last nine months. At least this way we get to find out! Best of luck to everyone x

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