Methotrexate : Just an update on my last post. I... - PMRGCAuk

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Methotrexate

Abbey17 profile image
18 Replies

Just an update on my last post. I was very anxious and reluctant about going on Methotrexate, however I’ve now been on for 3 weeks, first 2 weeks, chronic exhaustion! This last 5 days I feel amazing! Just how I felt pre PMR. Full of energy and worked full time all week. I don’t know how I’ll feel when I start to reduce the pred but I’m enjoying the feeling of normality for along as it lasts. In fact each time I’ve finished work I haven’t needed to rest afterwards. I’m following all the rules from the consultant, I’ve had no adverse side effects.

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Abbey17
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18 Replies
MrsNails profile image
MrsNails

Excellent News - but take it steady! What dose of Pred are you on? And what’s the Recommended Tapering Regime from your Consultant?

MrsN

Abbey17 profile image
Abbey17 in reply toMrsNails

I’m on 11mg, then not to reduce until my next appointment (3 weeks) then reduce every 8 weeks. I will take it steady thanks, you are right of course, just catching up with work while I am able to. It’s so good to feel normal for however little or long it lasts. X

MrsNails profile image
MrsNails in reply toAbbey17

It’s just the temptation to ‘catch up’ that you have to be mindful of…..But so pleased you are doing well 👏🏼👏🏼👏🏼

Maisie1958 profile image
Maisie1958

Yay! I’m just about to take my 13th dose of MTX tomorrow and have to say I feel great too! On 3.5mg Pred and I know it’s early days- PMR 6 years /seronegative inflammatory arthritis recently. Felt a bit headachy and sicky until folic acid increased but no wrist or ankle aches that I’ve had for the last 3 plus years. I must admit to feeling an increase in energy from the first dose. I was very dubious starting MTX but so far so good! Hope all goes well for you.

Abbey17 profile image
Abbey17 in reply toMaisie1958

Great to hear and hope it goes well for you too X

MrsNails profile image
MrsNails in reply toMaisie1958

Great News Maisie 👏🏼👏🏼👏🏼

Maisie1958 profile image
Maisie1958

PS thank you MrsNails for the info and encouragement x

Abbey17 profile image
Abbey17 in reply toMaisie1958

Ditto! 🙏

MrsNails profile image
MrsNails in reply toMaisie1958

Anytime 😉

Mamamia21 profile image
Mamamia21

It is so good to read this Abbey, I started Methotrexate on Thursday after a lot of anxiety but so far so good. Small headache since starting but other than that nothing. I really hope I have the same reaction as you... there is hope so thank you 😊

Abbey17 profile image
Abbey17 in reply toMamamia21

Good luck with it, I hope it works for you x

MrsNails profile image
MrsNails

Abbey17 Maisie1958 Mamamia21 Ladies - don’t forget to drink plenty of water on MTX Days & the following day - it really helps - Good Luck 🍀🍀🍀

Keep Us Posted

MrsN

Abbey17 profile image
Abbey17 in reply toMrsNails

I will thanks again x

Plains profile image
Plains

Great news. I have been on it for about 4 months. I think it maybe be helping me in reducing my prednisone. After a flair up a week ago, back down to 6 mg. In a few weeks will go to 5 1/2, which I was on before the flair up. Good luck with your continued success!!

Rottsuzi profile image
Rottsuzi

Hi abbey , what dose of methotrexate are you on and is it injections, I was put on 10mg tablets but going to start injections this week . I definitely feel it’s helping me get down the prednisolone.

Abbey17 profile image
Abbey17 in reply toRottsuzi

Hi that is so good to hear. I was on 10mg for 2 weeks, then 15 mg. I’m on the tablets and have my first review in just over two week. Not sure if I’ll stay on tablets or go on injections. But not feeling as scared about it as I did.

MarkWin profile image
MarkWin

Fantastic news and hope that this is sustainable. I too am on week 3, but this is second time around as I had come off steroids in Jul 20, and MTX in Nov 20, though new Rheumy wasn't sure why I was instructed to stop MTX by last Rheumy!?I restarted steroids in Dec 20, now down to 7 from 20, and MTX in Oct 21, 10 for 2 weeks now 15 onwards.

I was a bit wary of this though understand 'urgency' to reduce steroids as I would not want to carry on with them any longer than necessary (am 61, with GCA).

I do not appear to have same energy levels you have, and had to give up work in Aug 18, and have found utter lack of physical robustness a real problem. Unable to find P/T paid work that suits energy (and location) so some volunteering and local walks only. My main concern has been returning to the fray too soon, and after steroid 'boost' in early days once out of hospital, soon found that this was completely unsustainable!

Am really hoping that MTX might offer route to more stable regime so I can offer/do more.

Good luck with keeping your energy levels up, and the wretched immune system in check.

Abbey17 profile image
Abbey17 in reply toMarkWin

Thank you hope it goes well for you. The energy was a bonus as I’ve had a terrible year energy wise with long flare. Work is really hard but I’m self employed with customer orders building up. I honestly believe if I was employed by a firm I would have had to give up as my work ability has been so up and down. I’m 64 so 2 more years before pension which will take the pressure off. I hope MTX works out well for you x

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