Methatrexate: Can I just stop this I feel craps most of... - NRAS

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Methatrexate

Scotthejock profile image
14 Replies

Can I just stop this I feel craps most of the time. Arthritis is really settled I'v had rheumatoid for 27 years can it burn out ?? Thanks

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Scotthejock
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14 Replies
Kathyfitz12 profile image
Kathyfitz12

Talk to your rheumy or nurse.....remember how painful RA can be.

Maybe a change in meds would keep you pain free & not make you feel so awful?

Good luck,

Kathy

farm123 profile image
farm123

Unfortunately I don't think so. I am 30 years in after beginning with symptoms when I was 19. As kathyfitz says it may be time for a drug review as sometimes dealing with the drug side effects can be as problematic as the disease itself. Farm

Matilda7 profile image
Matilda7

When I was diagnosed in 1978 I was told it would burn itself out...and although I managed without drugs for many years recently

it's got worse, and I don't think they now tell newly diagnosed people to expect that to happen.

Matilda7 profile image
Matilda7

If arthritis is settled I'm sure you could try cutting the dose of MTX. Best to do it with the support of either your GP or consultant. They should be delighted to help!

Scotthejock profile image
Scotthejock

Thanks folks I'm giving this week's dose a miss I'm only on 15mg , see if antibiotics lift my chest 👍

nomoreheels profile image
nomoreheels

Having had it so long I don't think it's likely it's burnt out unfortunately, more that you're well controlled. I think what needs determining is if your arthritis is settled because of MTX & if it's the cause of you feeling cr@p, even though it's controlled you you're troubled with it making you feel awful. Time to talk to your Rheumy or Rheumy nurse, they're the ones to determIne the cause. You don't say how specifically it makes you feel but maybe the dose is too high now, they may suggest reducing the dose or there are other DMARDs you can try. That said it would be a shame if it controls you well to give up on it if they can ease your symptoms, if MTX is the cause & not the disease itself.

For what it's worth I wouldn't just stop injecting, unless your GP has prescribed a contraindicated penicillin based antibiotic or he/she has advised you to do so. I've been without my meds (inj MTX & the normal add-ons) whilst waiting for an appointment with a Rheumy to reinstate my meds when I moved back to the UK, it wasn't pretty! Better to be guided by your team, they're the ones who know your history & are there to help you.

Good luck.

Scotthejock profile image
Scotthejock in reply to nomoreheels

Thanks I'm calling tomorrow speak to nurse im doing well on methotrexate 8 years and I'm flare up free , only pain is from joint damage over years .. I actually play gold now still knackered next day but I never lay down to illness .. many thanks ps only see rheumatolligist 1st a year now .ta

nomoreheels profile image
nomoreheels in reply to Scotthejock

That's great, you really are well controlled. I hope your Rheumy nurse has a plan for you & you're happy with it.

Rahendy profile image
Rahendy

I've only had it for 2 years and was on the max 25mg of methotrexate with hydroxy chloroquine, narproxen and cocodamol but was admitted to hospital with a different illness so stopped taking all meds while in. I asked the doc if I cold reduce the dose as I've had no pain for months but side effects were rubbish. He suggested that I stop completely and see what happens. that was 6 months ago and still no pain, I get the odd ache and think 'oh here it comes but gone the next day. I have no idea why it hasn't come back as it was pretty bad in my toes, knees and shoulders..... feel great as I don't take anything at all so no side effects. Haven't seen the doctor for 5 months so not discussed it with him but hope this carries on.

oldtimer profile image
oldtimer

I was on medication for years with only an occasional flare up. I came off DMARDs (I was changed from hydroxychloroquine to methotrexate (MTX) and felt terrible on it) with the agreement of my rheumy. I was OK from the symptom point of view for about 10 years - just the occasional episode of painful swollen joints which I just put up with because I didn't want to go back on MTX, then I had a major flare and it affected my bone marrow as well (which is apparently rare). In the interim, damage had occurred to my joints and I don't know if that would have been prevented if I had continued with DMARDs (Disease Modifying Anti -arthritis Drugs). I've put in the acronyms after the post from someone who said how baffling they were!

So talk to your rheumy, it sounds to me as if you need different treatment.

cathie profile image
cathie

I'd be very cautious. I was taken off mtx after about ten years. Not only was my RA flaring but the mtx had been containing the Oa in my knees. Whatever you do I'd be gradual

zipper5321 profile image
zipper5321 in reply to cathie

Cathie, what do you mean "mtx had been containing the OA in my knees'? does the medication cause or triggers OA?

cathie profile image
cathie in reply to zipper5321

HI, it had been holding it back. I think there was a research reported in Arthritis research uk on how methotrexate can limit OA.

BoneyC profile image
BoneyC

My RA has never burnt out, has been grumbling along for 44 years, although in the early days doctors did say it might burnt itself out to my mum. Over the years RA has damaged all my joints, including neck and lower spine and its the pain from all this damage PLUS the RA disease PLUS finding suitable/tolerable DMARD's & pain killers that is the challenge.

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