Methotrexate - go cold turkey or what?: Bonjour... - PMRGCAuk

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Methotrexate - go cold turkey or what?

IdasMum profile image
10 Replies

Bonjour!

Long time no post. Was going to write, "Hope you are all well" but, you wouldn't be here if that were the case! So, hope you're all having a better day today.

I had a very painful day yesterday, I have not kept note of a pattern but will do and see if the crisis days are the same each time. It got me thinking about Mx and that I take it on a Sunday, wondering whether my pain and low energy yesterday was connected to that. I Googled and can't see anything to suggest that is the case.

After a reasonable nights sleep, I woke with some discomfort (as is normal) but within an hour was 90% pain free and found myself clearing out the greenhouse (in my rudimentary fashion!) and getting some admin tasks organised and vacuuming upstairs! I cannot work out how I can be a wreck one day and then full of energy the next.

So, after Googling and discovering that I could just stop the Mx, (since I am still stuck at 8mgs of Pred and see know evidence of Steroid sparing) I have made an appt with my doctor to check with him about stopping.

My question, should he agree, "Could I stop (15mgs per week) or would I be better to drop half way for a while?"

I may wait to do this after our visit to the UK next month.

Couldn't resist adding this photo of 5 year old Thea who was here just over a week ago. Thanks for your indulgence.

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IdasMum
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10 Replies
Longtimer profile image
Longtimer

Lovely picture, love her dress!....Others will be along soon to advise....

PMRpro profile image
PMRproAmbassador

You can just stop MTX, doesn't need to be weaned off. But you MIGHT find it has been doing something though less likely if you haven't been able to reduce the dose despite the MTX.

I don't see why the bad day isn't connected to the MTX - it is renowned for causing "MTX flu" and it manifests in various ways. Lots of RA patients take it Friday night so the aawfulness happens over the weekend and they can go back to work on Monday!

Obviously - hasn't she grown!!!! She looks very grown-up. Last picture I remember was when she was tiny! It can't be 5 years ago ...

IdasMum profile image
IdasMum in reply to PMRpro

Wow, that's interesting. Thank you. Mx flu sounds like a good description!

Yes, she's grown. <3

tangocharlie profile image
tangocharlie

I'm on MTX and mentioned to my rheumatologist that I feel wiped out for 2-3 days after taking it - she said that was very common for most people - so I joked 'you didn't tell me that before I agreed to it! Hopefully it will get a bit better - I'm only on my 4th week. I'm determined to give it 3 months to see if it works. Are you taking folic acid too? Not sure what it does exactly but I'm told it eases the side effects.

PMRpro profile image
PMRproAmbassador in reply to tangocharlie

It replaces the folic acid that the MTX destroys - and should relieve some of the adverse effects.

Sharitone profile image
Sharitone in reply to tangocharlie

It stops your hair falling out! I wish I had known that in advance, then I would have asked for a higher dose more quickly!

dancersize2 profile image
dancersize2

Even though I could just stop MTX I tapered the dose just in case it was doing more than I thought. Now on 10mg weekly. Rheumy told me to stay there until I see her in August since I've finally stopped the pred. Now I'm stretching the time between doses.

IdasMum profile image
IdasMum

Have seen doctor this morning ( to be polite lol). Mark gave me away and told him I'd already stopped (I take mine on a Sunday!).

So Mx free for now unless PMR flares.

My daughter has just booked our 4th Covid vaccines for us and the website was not talking to me.

PMRpro profile image
PMRproAmbassador in reply to IdasMum

And the doc said???

IdasMum profile image
IdasMum in reply to PMRpro

Yes lol. He said to pay attention to any flares and I said I'd reintroduce Mx rather than up my Pred dose. He wasn't surprised I'd stop already, he knows me well.

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