stopping MTX: hi I have stopped taking MTX now for... - NRAS

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stopping MTX

B3ntl3y profile image
22 Replies

hi I have stopped taking MTX now for approx 12 weeks

I feel better still have pain and feel sick sometimes

I have lost weight less headaches feel happier

Not taking any medication at the moment

Will not take MTX again still do wonder how long it takes to get out of the the system If ever!

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B3ntl3y profile image
B3ntl3y
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22 Replies
Bootoo profile image
Bootoo

It only takes about a week to clear your system. Speak to your rheumy team if you haven't already as just stopping medication can result in damage to your joints.

B3ntl3y profile image
B3ntl3y in reply toBootoo

Morning yes they know I am not taking it

They were ok with it will just have y try o see how I go

helixhelix profile image
helixhelix in reply toBootoo

People who want to get pregnant are told to wait 3 months for the MTX to completely clear their system. So yes the half life of the drug is quite short, but it will have affected the cellular processes in your body which can take longer to wear off.

nothingseems2work profile image
nothingseems2work

Desperate measures....But I took same route last year . Really wanted to stop all the chemicals in my body .All went well for about three months , but gradually noticed pain in my wrist and ankles , then arms and shoulders . Carried on till I had to admit that I couldn't function i.e. Just move ! And now thankful to be back on methotrexate with a few paracetamol when needed , and able to move around . All I can say , is listen to your body and do what you think is right for you . If I'd not tried getting drug free , I'd never have know how thankful I am for methotrexate . Good luck .

helixhelix profile image
helixhelix in reply tonothingseems2work

Great answer! I tried going drug free by tapering down doses and like you things slowly crept back.

Mmrr profile image
Mmrr

I too stopped MTX and informed my rheumatologist that I would not be taking it again. My issue was the upset to my gut, I was never off the loo and house bound for 3 or so days after injecting as i needed to be near a loo at all times. It took almost a year for my gut to recover.

B3ntl3y profile image
B3ntl3y in reply toMmrr

Hope your keeping well without it

Mmrr profile image
Mmrr in reply toB3ntl3y

I've been on biologics and now JAK inhibitors since then. I also take leflunomide and prednisolone everyday too with moderate success.

B3ntl3y profile image
B3ntl3y in reply toMmrr

Hi again

I was also on Filigotinib which was a JAK don’t think you can stay on prednisolone for a long time we’ll that’s what I was told

Mmrr profile image
Mmrr in reply toB3ntl3y

It isn't ideal to be on prednisolone for long spells, but I haven't been able to do without it. I've been taking various dosages for over 5 years. I had a spontaneous fracture of my hip last year and required a hip replacement. I'm still on prednisolone and not having much luck trying to taper down. But given the option I would still take prednisolone again as it has given me a quality of life I wouldn't otherwise have had. I hope you get an improvement.

B3ntl3y profile image
B3ntl3y in reply toMmrr

I wish you the best life possible thanks for the chat

B3ntl3y profile image
B3ntl3y

Hope your keeping well without it

Deeb1764 profile image
Deeb1764

same as Mmrr I still take Pred as no relief from pain meds and it keeps me upright however it has done damage to some organs, so yes if you can be off it great!

Sheila_G profile image
Sheila_G

It took 8 weeks to return with a vengeance for me. I truly hope you can manage without but never say never. Good luck.

B3ntl3y profile image
B3ntl3y in reply toSheila_G

No that’s true had a fall last night so in a bit more pain than usual

Sheila_G profile image
Sheila_G in reply toB3ntl3y

Oh no. I hope you feel better soon

B3ntl3y profile image
B3ntl3y

thanks

Amandaazz profile image
Amandaazz

Same, kept telling Rheumatology I felt dreadful and had swollen fingers for about 9 months, (bloods were ok) stopped it and felt great for about 3 wks and then went rapidly down hill, I've never been in so much pain all over! Had a steriod injection last week and now being screened for biologics. (I do gave fibro as well tho). However, I will say that whilst the pain has been excruciating the dreadful depression and anxiety has left me and am eating properly again!

B3ntl3y profile image
B3ntl3y in reply toAmandaazz

Yer the anxiety is awful I didn’t know it was a side effect at the time thought it was just me

Feel better now but still have it slightly

Hope you can find a way to control your pain

Milner15 profile image
Milner15 in reply toAmandaazz

Hi, i think i am having the same problems you have had. I honestly think Methotrexate is making my joints worse. I have been on it 5 months for RA and i am in agony and so down. When i said its not working and i am getting worse the nurses wanted to increase but i just can not face it. My GP saw me yesterday and agreed and said there were other options but the RA nurses seem to think i should stick with it. I dont know what to do, i know it sounds drematic but i feel like its slowly killing me both physically and mentally. I have no life at the minute. Any advice would help. Also your the first person i have seen that felt like it made your joints worse. I feel my team apart from my GP (who actually saw me) dont belive me.

B3ntl3y profile image
B3ntl3y in reply toMilner15

Hello

Sorry to hear your problem

I hated being on it had anxiety no get up and go . You should do what is right for you.I have cropped 2 dress sizes since being off it

Sorry can’t be anymore help hope you feel more your old self soon

B3ntl3y profile image
B3ntl3y

feel for you it’s very difficult as they all sing praises for MTX At this moment in time I don’t feel any worse for coming off of it been off it now for approx 4-5 months I hope you find a way forward soo.

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