Methotrexate help please: I started taking this... - LUPUS UK

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Methotrexate help please

puffyface profile image
18 Replies

I started taking this last Wednesday and side effects hit with aggression on Friday. SO tired, indigestion, headaches and my tummy was violently ill on Friday evening. It still feels like it’s been through a boxing match.

any advice very gratefully received. At the moment I don’t want to take it this week.

Does tummy hurt mean liver doesn’t like it?

thank you in advance for any help.

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puffyface profile image
puffyface
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18 Replies
heatherevans28 profile image
heatherevans28

Your monitoring bloods will pick up any issues but it's unlikely to be your liver at this stage. I'd give it a few weeks as all immune suppressants take time to settle, but if you aren't tolerating it well, then you can switch to injections. That's what I had to do as I had side effects on the oral version. The injections don't have any for me, and my consultant said that's quite common.

All the best x

Mustgetaroundtoit profile image
Mustgetaroundtoit in reply toheatherevans28

"Phobe"!!!!

puffyface profile image
puffyface in reply toheatherevans28

Thank you

Hi! I'm now on the injection (sounds far worse than it is -really easy/painfree&I'm a needle phone! ). I had side effects on the tablets. My Rheumatologist also upped my Folic Acid to 6 days a week -not the day of Methotrexate. I always feel a bit rough,but blood tests are good (although I have just had a flare,so dosage raised to 25mg! )so it's under control...ish!!!😉 Good luck. Your body does take time to adjust to it all. I was diagnosed at the end of 2019.

puffyface profile image
puffyface in reply toMustgetaroundtoit

Thank you. Am terrified about taking this weeks tabs tomorrow!

SLS2103 profile image
SLS2103

It took me a few weeks to adjust but then I got used to it and had no issues. When I had to increase the dose a few weeks ago, the side effects started again but thankfully are also subsiding . It can be tough going, but fingers crossed 🤞 that the side effects subside for you like they did for me.

puffyface profile image
puffyface in reply toSLS2103

I’m glad you’re feeling better. Thank you. I really hope so 🙏🏻😊

Barbara17 profile image
Barbara17

I agree the injections have far less side effects and are simple and easy to use. But ask your consultant to start low and build up tolerance.

puffyface profile image
puffyface in reply toBarbara17

thank you Barbara 17. Yes….I’m doing that myself and will stay on the dose I took last week until it (hopefully) gets easier. Do you inject your tummy? I did that for a year on a belimumbab trial. I used to stare at the injection for at least half an hour before I could bring myself to inject it. Not because it hurt…I think it was more the fact of injecting drugs into my system. 😊

Barbara17 profile image
Barbara17 in reply topuffyface

I inject into my thighs. It’s a cartridge with a very small needle so you hardly feel it. I take it after dinner and then , hopefully, sleep off any adverse effects.

Hamptons profile image
Hamptons

I had a similar experience but kept going - for some it gets better but I exacerbated other symptoms and became quite ill. talk to your rheumy nurse. Because I react to many chemicals I was advised to keep going. My liver was impacted quite quickly so be cautious. I stopped after 4 weeks. But it took a while to then clear my system.

puffyface profile image
puffyface in reply toHamptons

Thank you. I don’t have a rhemy nurse, and see rheumy every 6 months. I will see how I go for a few weeks…I have blocked out the 3 days after each week for a while…so that I can be sick alone!! Presumably I can talk to the nurse at gp who does blood tests. I’m sorry you couldn’t keep going. Have you found something else to help?

Hamptons profile image
Hamptons in reply topuffyface

I tried azathrioprine?? But lasted a week.

I now just take HCQ which makes life manageable. I have never been good with tablets and side effects.

Good luck, I hope it works out

Krazykat26 profile image
Krazykat26

I had side effects after my first dose of Methotrexate too although they weren't as intense as yours. On the second dose..although I was reluctant to take them again I was fine. I was started on a low dose my dermy said..12.5mgs at the start. I've had no problems with the tablets and I have to say it's been life changing for me.I think it's best to try to stick with it for a few doses..but if side effects like this are happening after every dose then clearly it's not being tolerated n it's time to rethink.

I take Mtx on a Sunday and I don't plan anything for a couple of days afterwards so I can rest as I need to. I hope it settles down for you 💜🌈xx

Aaaah, I understand your concern, but as many of us on here are saying -side effects are a pain in the...well... but the drug can be a life saver! Taking them/jab after a meal (I also take a Probiotic..? May help)& sleep it off! Try everything that makes you "Hugge"(I think I spelled that right!?). Warm blanket/hot chocolate/teddy bear/ice/icecream...fluffy socks! Whatever makes you go "Aaaah"! Take your dose& then distract yourself with a lovely bit of comfort and I'm sure that the side effects will subside. My jab day tomorrow, and I no longer really notice it. Hope that you can take some encouragement from this😊

puffyface profile image
puffyface in reply toMustgetaroundtoit

I do. Thank you all. 🤞💕

Cal48 profile image
Cal48

I think we all feel like this at first on this drug . Do you take it in the late evening with ginger biscuits or toast and a cup of tea. I’ve been on it for 25 years and have got used to it. I always insist on Matrex make of tablets and take folic every day but not metho day. I used to hate taking the tablets each week but now it’s acceptable as long as I do have As I suggested . good luck

LuzyCLL profile image
LuzyCLL

my Rheumatologist told me to take Robitussin with the methotrexate to reduce side effects I can’t stay awake now

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