Stopping Methotrexate - one more blood test?

[SusyTe]

With Dr H's blessing (by email) I have decided to stop taking MTX. I don't feel it is making any difference to my Pred taper and would rather take less drugs - I intend to try the DSNS method going forward. All MTX seems to have done is make my hair fall out - it has gone so thin and is still coming out. Plus I feel totally wiped out on the day I take it and the day after. Have had enough. I have one of the necessary monthly blood tests booked on Monday 14th August so guess I should probably still go ahead and have that, even 'though I have decided that my last dose of MTX was the one I took yesterday? Any advice gratefully received.

[PMRpro Ambassador]

Nothing wrong with having an extra blood test - unless you are desperately anaemic or it is an awful faff! But I agree with your decision - I would be very reluctant to try it in the first place.

[SusyTe in reply to PMRpro]

Thanks, PMRpro - will have the blood test then. Glad you agree - hubby is worried about me having a flare but I don't want to take it anymore - Pred is a horrible enough drug without adding another into the mix.

[PMRpro Ambassador in reply to SusyTe]

You may well have a bit of a flare and you may well need a mg or two more pred - but it is only one layer of side effects and a mg or so one way or the other really isn't that big a cog in the wheel of time...

[SusyTe in reply to PMRpro]

Thank you and very good point - slow and steady over time is best.

[SusyTe in reply to PMRpro]

Well, you were right as usual, PMRpro - I am having a little flare - have stuck it out all day but very weepy and still in pain so am going to take an extra 1 mg. Thanks for the warning - before I remembered it I was panicking a bit.

[PMRpro Ambassador in reply to SusyTe]

I hope it is enough - but don't rush to go back down. There is no virtue in taking too low a dose - in the end it gets you nowhere! Everyone has been there. Even me!!!

[SusyTe in reply to PMRpro]

Thanks, PMRpro. Am having a small malt whisky and some dark chocolate - seems to be helping! 😉

[PMRpro Ambassador in reply to SusyTe]

I just had chilli chocolate and fizzy rose - but a small malt would have hit the spot too!!!

[1602]

Hi SuztTe like you I was given MTX and persevered for 9months I felt no benefit whatsoever, in fact had 2 flares. I stopped several months ago and I am reducing pred very gradually. I too had my final blood test after stopping just for peace of mind. Good luck Cath

[SusyTe in reply to 1602]

Thanks for replying, Cath. Sorry it didn't work for you either. Good to have one less drug to take. Good luck with your PMR journey.

[Sho-Sho]

I went onto Methotexate as finding it difficult to reduce Prednisolone dose when on 22 and a half (have GCA started at 60mg a year ago). Took it for 4 months felt more and more unwell, even more fatigued, hair falling out, so when I got to 15mg I stopped taking it with blessing of Rheumatologist.

That was end of May, feel so much better, hair growing again and managing to reduce Prednisolone, now down to 13 and using DSD method.

So p,eased to have stopped it.

[SusyTe in reply to Sho-Sho]

Fantastic - so glad you feel better without it, Sho! Thanks for responding.