Methotrexate, side effects & work: I don’t have RA but... - NRAS

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Methotrexate, side effects & work

Mish-da
Mish-da

I don’t have RA but ANCA associated vasculitis. Have posted on vasculitis forum but as a lot of you guys on here are on MTX thought I’d give this a go too!

Just wondering if anybody needed to take some time off work when initially starting MTX? My first dose was on Wednesday 15mg tablets, following advice took them before My evening meal in the hope I sleep off most of the side effects. Now I know I’m pretty sensitive to meds but I woke around 2am and felt like id been run over by a bulldozer. Didn’t feel much better all that day. Come Friday side effects eased a bit ( nausea headache and feeling less spaced out) but not enough where I felt safe enough to drive. This morning I still have a headache and feeling a bit woozy.

How long do theses last 4 days time I have to take them again 😫.

Now I’m thinking about work luckily I took Thur/Fri as leave but I don’t think I can work on those days at the moment unless next time around it’s better! Has anyone else needed some time off or am I being a whus? ( also take folic acid 3x a week).

I am due to commence the injections in a couple of weeks and hear they have less side effects?

Anyone’s experiences & advice would be welcomed.

14 Replies
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Hi Mish-da

I used to endure I had lots of stodge eg porridge/pizza with MTX. It helped!

Hidden
Hidden

Hi Mish-da, sorry to hear that your first dose of MTX hasn’t been great. My first dose did cause some issues, but I put that down to my folic acid levels being low - started taking it at the same time as MTX - is this the case for you? Since then, I’ve been pretty ok - feel a little blah and fatigued, but no nausea etc. You can take folic acid everyday EXCEPT MTX day,

Also, things improve as you take MTX, so do try and give it a chance. I see you’re going to move to injections, they are apparently supposed to be better regarding the side effects, and there are a few here using the injectable form, hopefully someone will come along and offer an opinion. Hope this helps, cheers Deb :)

Hi Deb thank you for those encouraging words. The nurse advised I take the folic acid for 3 days prior to starting the MTX which I did. Then take for 3 days following the next MTX. Have you experienced hair loss this is now an additional worrying factor for me going by Charisma’s post?

Hidden
Hidden

Hi, I’ve been taking MTX for 14 weeks, can’t say I’ve noticed hair loss. I was someone who didn’t want to take MTX because of potential side effects. Ultimately, I had to. I’ve deliberately adopted a positive attitude, and have almost zero issues with it, even when I doubled my dose 2 weeks ago. Cheers Deb :)

Mish-da
Mish-da
in reply to Hidden

That’s great news yes I’m a glass half full girl too, so fingers crossed things will get better. May need to focus on health a bit more than work I think!! Thanks again Mish

Hidden
Hidden

I'm retired now, but was on MTX when working. I had no problems with it.

Hiya Mish-da, welcome to the HU NRAS site. Your symptoms are pretty typical for someone new to MTX I'm afraid. It is a very good med but does need patience for them to ease off, not easy when you start off feeling rough i appreciate.

When I first started it 10 years ago my Consultant recommended I took my 15mg throughout the day with meals so 2 tablets with breakfast, lunch & evening meal, his thinking was splitting the dose wasn't such a hit on the system. He thought if it was taken before bed & I was nauseous it would disturb my sleep but I've heard others do with success, as you've found it doesn't so not sure I would again! It's worked well for me, I had a little hair thinning initially so my 1 folic acid the day before was added to the day after as well, it soon stopped. I did have my hair shorter so it needed less styling.

I changed over to injections after the first year. I needed a dose increase & as injections are usually better tolerated & have greater bioavailability it made sense. I'm still on them, currently 20mg & take folic acid 6 days, my Rheumy's preference. I'm a little more tired the day after & just graze rather than face a full meal but otherwise I'm good, certainly worth just the one day of iffiness.

You do have room to increase your folic acid if changing when you change to injections you still have side effects if your Rheumy ok's it.

Rushing a bit for an appointment. If there's anything else you'd like to tap into my experience just ask.

Mish-da
Mish-da
in reply to nomoreheels

Thank you nomoreshoes that’s been really helpful

nomoreheels
nomoreheels
in reply to Mish-da

Ha, can't do without shoes! Easily done. Can wear heels now though.

Mish-da
Mish-da
in reply to nomoreheels

Haha I didn’t even realise I put that automatic I guess! 😂😂

nomoreheels
nomoreheels
in reply to Mish-da

We've had worse words down to autocorrect. 🙈

Lots of water, and then some more.... you must keep well hydrated. Plus folic acid.

The effects did wear off slowly although still have to have a lazy morning the day after - even after 8 years! My hair thinned to start with, but that then recovered and now its fine.

But try to be kind to yourself for a few weeks. Is your employer aware? And will they class a few extra days off while you get used to it as "reasonable adjustments"?

You might also find the section of this paper on MTX and the 'blahs' interesting. I've not tried it.

rheumnow.com/content/dsb-ma...

Mish-da
Mish-da
in reply to helixhelix

Ok thanks I’ll have a look at that. Yes my manager is aware but not the most proactive! I’m hoping to have every Thursday off for a few weeks. Being a mental health nurse in the community I really need to be on the ball!

I take zofran (anti-nausea) an hour before I take the methotrexate and I have my big meal - lupper - after lunch time but before suppertime, only having had breakfast those days. I take folic acid and Biotin together every morning after breakfast even on methotrexate days as per my rheumy. Helps a lot. I feel crummy and exhausted but functional on my part time job 4 hours everyday. I keep hoping it will last but worry it won’t. The zofran was a big help for me. Ask your rheumy about it. Good luck.

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