Methotrexate good or bad ? : Hi I’ve had lupus... - LUPUS UK

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Methotrexate good or bad ?

Gizmok9 profile image
6 Replies

Hi I’ve had lupus diagnosis for nearly 3 years now I’m on 400mg hydroxy, sr tramadol full does and amytriptline. Currently trying etodolac, tried various NSAIDs, diclofinic, naproxen, ibrofen, etoricoxib, celecoxib also gabapentin, pregagablin (these are ones I remember!) either with no help or reactions to or made un fit to drive.

I’ve had a few kenalog injections over years but with no major benefit from.

So now I’ve now been told I can try methotrexate, gp being notified, rheumatologist is bit un positive on that it would help but un willingness to use steroids or anything else. I’ve had few friends with positive results using it, so thought would quiz others experience?

Many thanks x

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6 Replies
HazelW profile image
HazelW

I have been on methotrexate for a very long time & my GP is considering stopping it for a while as long term usage can be harmful. I dread the day that he does that as it has been a godsend to me in controlling my symptoms.

FlowerdownAnnC profile image
FlowerdownAnnC

Hi - my experience of methotrexate is very positive 😄. I was diagnosed with lupus almost 20 years ago & for the first 10 years went through trying azathiapine, cyclophosphamide, tacrolimus with some good effects but residual symptoms & lots of side effects.

Methotrexate has really suited me. Yes I had some nausea at first but now I’m fine when I take it. My worry is at sometime they’ll stop it as I’m terrified of going back to being unwell.

I think it’s the old horses for courses thing- but methotrexate has worked well for me. Good luck 😄 x

misty14 profile image
misty14

Hi gizmo

Methotrexate is very good for the arthritis and as you've tried so many NSAIDs I expect this is why your Eheumy has suggested it!. I took it for years with no problems just benefits!. You take folic acid as well but not on MTX day. Your GP and Rheumy will explain why.

If you do get side effects of nausea to begin with they should settle soon. If not it can always be given by injection which can be more effective and lessens the side effects.

Do hope that it helps you and you keep us posted how you get on. X

Carabubbles profile image
Carabubbles

Hey, I've been on methotrexate for just over 2 years (it was the first thing they suggested for me). My dose recently got up to 20mg methotrexate injections and it definitely helps. It’s lowered all the symptoms and pain but hasn’t entirely stopped it either. At the same time you definitely notice when you have to stop if you catch a bug and then you’re body has to play catch up.

I found the injections work better than the tablets due to the nausea but everyone’s different, though I’d definitely say it’s worth a go.

Gizmok9 profile image
Gizmok9

Thanks for replies I think I will give it a go, if it helps my joints definitely a plus to everything I’ve tried so far . I’ve got Docs on 30th x👍

Sammymoat1986 profile image
Sammymoat1986

I’ve been on methotrexate for 4 years 12.5 mg tablets to start for 2 years, but I kept getting oral thrush, and quite a number of infections so I changed to injections for a few more years and they were brilliant no side effects a bit groggy the next day, but I’ve just been upped to 20mg as I’m hAving a flare so trying these I’d defo recommend methotrexate xxx

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