Anyone know of a study of what happens when you come ... - NRAS

NRAS
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Anyone know of a study of what happens when you come of mtx

artyone
artyone
15 Replies

My question is how does the ra react when u come off mtx my understanding is you can't stay on for ever

15 Replies
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allanah

Haven't heard of what you say but I think the idea is to get you to medical remission then they try without the drugs if they think that's best for you? Best check with the rheumies or nras helpline ?

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helixhelix

Well I've e-spoken to people who've been on MTX for 20+ years so I don't think it's automatic that you have to come off it after any specific period of time. It depends how you get on. Sadly, for most people once you come off the drugs the RA slowly returns. It's only a very lucky few that stay in remission without drugs. But as Allanah says, talk to your rheumy team if you're worried.

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BoneyC

I was on MTX for over 30 years with no problems until I became neutropenic. My Rheumatologist thought MTX was the cause and told me I would never take MTX again. However, having failed Humira & Rituximab, 3 years later I'm back on MTX having fortnightly bloods to check neutrophils. Never heard about having to come off MTX for any reason other than becoming intolerant to it.

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Pands
Pands
in reply to BoneyC

Hi BoneyC , I have just had to come off my MTX this week for the same reason (after years of MTX). How long did it take for your neutrophils to come back up if you can remember ? I have just been left with my humira and lots of booked blood tests at the moment.

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BoneyC
BoneyC
in reply to Pands

Hi Pands, I was off MTX thereabouts 3 years but my neutrophils recovered after 2 years, hovering between 0.8 & 2.4 before going up over 5. I was prescribed Prednisolone steroids & Hydroxychloroquine - was told this was the treatment for low white count. I've been back on MTX for 10 weeks, starting off on 5mg weekly, fortnightly bloods, and gradually increasing. I had a blood test to check neutrophil antibodies which was negative, so not my bone marrow causing neutropenia.

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Pands
Pands
in reply to BoneyC

Oh thank you- more info there than I got from the phone call from the hospital! I guess I will see what happens after my next blood test. They were worried as the numbers had dropped again after last month to 1.5 but if they continue the same way it would be about 1.1 this time.

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BoneyC
BoneyC
in reply to Pands

My neutrophils tend to jump and down from fortnight to fortnight anyway, but it's the overall trend that's important. When I had an infection whilst on Humira last year, my neutrophils rose from 1.95 to 8.22. Hopefully your neutrophils will recover and you'll be allowed to recommence MTX.

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Cattledog
Cattledog
in reply to BoneyC

....and you should know BoneyC!

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BoneyC
BoneyC
in reply to Cattledog

Don't I just Cattledog, woof woof!!

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Zigzager

I have not stopped mtx, but at one stage reduced to 4 pills and was fine. Still taking the Humira injection .

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cathie

I've never heard to this either, unless you develop side effects like I did with liver damage. My experience - mtx was suddenly stopped from 25mg a week to zero. I was in a really bad way, it should have been tapered I think. All RA and oa symptoms returned with a vengeance. Then I was put on pred, which was a relief, but now I'm struggling to come off it.

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denvajade

Hi there I recently came methotrexate and it took about 12 weeks to flare again.

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wishbone

I stopped taking mtx 20mg after 9 years because of possible complications with another recently acquired health condition. My rheumatologist suggested that I try going without any specialised RA drugs to see how I get on. Can't remember how long exactly, but within a matter of weeks my RA returned with a vengeance and I could not believe the amount of pain I was in. It certainly made me appreciate what a good job mtx was doing for me.

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nomoreheels

I haven't heard of a UK study on this, nor have I ever queried it, but I can offer my experience.

I had a hiatus of 3 months when returning to the UK. I returned with a months supply, considered by my GP in Spain to be enough to get me by till I needed to refill my prescription. It didn't occur to her or me I wouldn't get an urgent appointment to see a Rheumy to reinstate my MTX, silly me. Boy, did I pay for that error. All of my body objected & had the biggest flares I'd ever experienced & wouldn't ever want to be in that situation again. At my last appointment in Jan I was considered to be in medically induced remission & my steroids tapered & NSAIDCox2 prn'd, I remained on MTX. Steroids have now been reintroduced but still struggling.

The only info I can find regarding long term use is a study conducted in Melbourne by the USLNM. This is the link ncbi.nlm.nih.gov/pubmed/109...

Hope this helps.

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