Methotrexate ;) : Well it happened! My first... - PMRGCAuk

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Methotrexate ;)

24 Replies

Well it happened! My first Rheumatologist appointment since my last 5 minute rush job in 2019.....

As I expected everything I have an issue with was explained to me then it was suggested I try Methotrexate

So I said "OK" and there you go. I have to get back down to 5mg of pred from 9mg

I've read so many good stories and some horrendous but I'm willing to give it a go.

I have read all about it here and there but you lovely people are my favourites so I thought I'd type here first

David

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24 Replies
Elispeth profile image
Elispeth

Hope it works well for you! Our male friend who is in his late 60s went on it and it has really worked well for him. Hardly any side effects, he has reduced his steroids and he is a lot more mobile. Good luck 👍

in reply toElispeth

Thank you for the hope :)

Elispeth profile image
Elispeth in reply to

One day at a time David 🙏!

123-go profile image
123-go

Keep up the positivity, David. 🤞

autumnlass profile image
autumnlass

It’s working well for me David - I’ve had virtually no side effects and feel much better since taking it. I was dreading taking it 14 weeks ago, but within 48 hours all the pain and inflammation was much reduced. I’m so glad that I did! 🍀☘️

Suet3942 profile image
Suet3942 in reply toautumnlass

I’ve had the same experience. No problems at all and now tapered to 3.5 mg pred.

autumnlass profile image
autumnlass in reply toSuet3942

Hello Suet1942

3-5 mg = terrific! What dose were you on of Prednisone when you started the MTX? I started at end of October at 10 mg and up to 15 mg now, and doing it slowly cos it’s winter and am more comfortable doing it that way, and at 14 mgm. It’s my 14 week of taking MTX.

Suet3942 profile image
Suet3942 in reply toautumnlass

Hello. I was on 10mg. I’ve yo yoed for years(had pmr for 11 years) I stopped the mx for 3 months a few years ago just to see if it was making a difference and had a massive flare. Think I’ve been confusing withdrawal symptoms with a flare so now I try to ignore the pain when I’m reducing and it passes after a few days. Good luck with the mx.

autumnlass profile image
autumnlass in reply toSuet3942

Thank you - it is confusing, withdrawal symptoms or a flare, but I find that Dorset Lady has written apt guidelines in FAQ has helped me with that. How long did it take from taking 10 mg to 3.5 mg?

Your post is an inspiration. 🌺 and uplifting.

in reply toautumnlass

That's good! I'm going to go for it and accept it in a chipper manner 😀

That's good.

I do worry about losing hair and getting a moonface 😱 quite concerned. Help!!!

Sharitone profile image
Sharitone in reply to

I think the moonface is more likely with pred than MTX. As for your hair, I take it folic acid was prescribed as well? You can take that up to 6x weekly - every day you don't take MTX - so it you have been prescribed less, and your hair starts falling out, get the dose increased, and it should stop. More than half of mine fell out, but it has slowly grown back, so don't panic!

autumnlass profile image
autumnlass in reply toSharitone

Folic Acid preventing hair shedding with me! 👍

in reply toautumnlass

I shall be well dose on it then! 🤪

autumnlass profile image
autumnlass in reply to

Good Luck David with whatever you decide! ☘️🍀

Topcar profile image
Topcar

Hi I was stuck at 15mg then 10mg pred until I started methotrexate got down to 7mg with methotrexate pills but had a few gastric issues and my hair started falling out so prescribed folic acid 6 days a week and it slowed down the hair loss but not gastric issues! Now changed to metoject and no gastric issues now hair loss seems to be just normal few strands again and I'm down to 5.5mg pred ! so here's hoping it works for you 🤞

GML19 profile image
GML19 in reply toTopcar

I was prescribed Methotrexate in October 2022 and it has enabled me to reduced my steroid dose to zero by December 2022. Yes I found the side effects difficult helped for me by fasting 1 day/ week. My hair is growing back. Good luck.

autumnlass profile image
autumnlass in reply toGML19

A really uplifting response - thank you! I’m so looking forward to being where you are! Hope it works for me too! ❤️🌺

Thank you for the answers :) I'm still very terrified...

I'm tapering right now. It's been one day and I'm in pain. Last night I was aching like crazy and had to go the Co-codamol route. 9mg - 8mg pred drop

Sometimes I think it can't be that bad if I found "my dose" of Pred and stuck to that.... ?

David

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

If it’s day one, it might be steroid withdrawal - if it is then it should go…but trying a slower tapering plan and 0.5mg rather than 1mg a time in future may help.

PMRpro profile image
PMRproAmbassador in reply to

If co-codamol worked, the chances are it isn't PMR directly - more evidence to add to DL's comment

in reply toPMRpro

Hi :) Co-codamol didn't work. I've just returned from a hobble around the neighbourhood. I did use some CBD oil drops and think/hope this may have helped.

I'm determined to get down to 5mg again

David

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