I have been on MTX for about 18 months. It took several weeks before my severe pain reduced with no obvious side effects. A few months ago most of my pain was gone and now my recovery is such that I am playing competion table tennis again as well as I was when had to stop nearly three years ago.
I am now wondering how soon it will be before my consutant suggests tapering my dosage. I confess I am in no hurry to start. I feel incredibly lucky compared to many who have posted here.
Is anyone able to share their experience of tapering or coming off MTX completely?
Can't help on that one as I'm on preds only. Best of luck maybe 3 years is your end of the underlining 'problem'
I'm assuming your diagnosis was PMR? It is rare for MTX to work on its own for PMR (if it did they'd use it instead of pred) and the question must always be asked as to whether what you have is really PMR or LORA which would almost certainly respond to MTX. If so, reducing the MTX will allow the LORA (if that is what it is) to resurface.
I don't know of anyone who was started on MTX as a steroid sparer who has also stopped the MTX so I doubt you'll get much response here. On the other hand - good news all round and it is possible that the PMR, if it was that, has gone into remission and you could stop the MTX. Good luck.
I have GCA however I am on Pred.
Wish you the best🌸
I have been on prednisone for a year, and spent three months testing out Methotrexate in an effort to accelerate off prednisone. I did not experience any of the benefits and when I delved into the risks and side effects of methotrexate, I decided to get off it. One drug is bad enough. Two is too much. Unlike prednisone, getting off methotrexate does not require tapering. You can stop cold turkey...which is what I did.
My rhuemy told me that the MXT is to help reduce the pred, then when the pred is to zero (!) you use the MXT to 'hold' the PMR. Once your are 'well' then you start reducing the MXT. I have yet to see it work - although as you know, I'm having great success with reducing the pred - down to 5mg and holding!
Late or elderly onset rheumatoid arthritis (EORA). It presents almost identically to PMR - hence the confusion. About 1 in 6 patients with a PMR diagnosis to start with has it revised at some point, mostly to LORA.
That's the thoery - but out of dozens whose doctors put them on MTX I don't know anyone for whom it has worked like that. If it did reliably they'd use it.
Many thanks.
And I'm so happy today!
I played three consecutive table tennis matches last night. Very tired afterwards but no aches or pains this morning. So whatever else is involved MTX has certainly done me no harm! I see my consultant tomorrow and will discuss some of the issues raised here with him.
Well done! Long may it last!
Update:
I saw my consultant today. She confirmed PMR remains my diagnosis. She is as happy as I am that I am feeling so well. She wants me to continue on my 15mg weekly dose of MTX for the next 6 months and will then consider reducing the dosage after that if I maintain my improvement. But she will recommend tapering rather than the cold turkey approach.
Thanks for the update. useful to know.
Update. I tapered off mtx over 6 weeks ending early July. No negative reaction and blood tests fine. Saw consultant 25 August and declared a free man. My personal journey is over. Fingers crossed for the future.