methotrexate injection side effects

[Sapphire1701]

hi,

I’ve recently been switched to injection over tablets for MTX..due to side effects with tablets. But I’m suffering with similar side effects (possibly worse) though am also feeling like my RA might be becoming a bit more active as I’ve been doing more.. upped my hours at work etc..

I injected sat night, felt terrible Sunday.. had no appetite, very sick and tired.. and still today my appetite hasn’t returned and managed to get to 3pm at work before coming home to throw up and briefly sleep. My joints are also a bit more noticeable, particularly my hands.. and still struggling to eat. Right now feel like I’ve been ploughed through by a truck!

Did anyone else experience similar when switching?

I think possibly just frustrated with the vicious cycle of this disease. The only way I can stay feeling relatively way, is to live life very slowly, with no stress or pressure. But as a single mum, and mortgage, bills etc.. it’s very hard…

sorry.. just feeling sorry for myself and know I need to eat properly to help but I can’t face it.

Thank you if you read this x

[Deeb1764]

I was like this as awful on pills so swapped to injectioNs and it just got worse. I kept trying and with a busy job I landed up being on 4 days off after taking injection as only way I could cope. See if work can work round things for a month to see if it gets better but definitely call RA team they took me off as I was crawling everywhere!

[Sapphire1701 in reply to Deeb1764]

thank you.. it’s reassuring to hear. The nurse was adamant I’d feel better with injection.. and I am only 3 weeks in.. on my 3rd drug already.. what a joy this disease is! And a very lonely one.. I’ll see how I go for next few weeks but def will go back to the team. I feel like such a hypochondriac! Thank you x

[Deeb1764 in reply to Sapphire1701]

this disease makes you feel like a hypochondriac unfortunately BUT you have to chase and follow thro or things spiral out of control

[KittyJ]

yes I had this when switched to injections, physically sick and wiped out for 5 days after, eventually I went back onto tablets as the lesser of two evils. Side effects can lessen the longer you’re in something but do keep your rheumy team informed how you are as they’ll think you’re ok unless you tell them otherwise. 🤞🏻 it improves for you.

[Sapphire1701 in reply to KittyJ]

Ah that’s interesting to hear, so thank you.. I hate moaning about it as know there are others so much worse off. I will keep trying for a few more weeks and see how it is.. I don’t want to be on any meds at all, but I already had a 6 week gap and had quite a bad flare towards the end.. thank you for your words x

[Basilly]

I had to swap to injections too and felt sick like you. The side effects did ease off after a few months and I have my appetite back now. It’s a really hard disease to live with, especially when you need to work and you’re a Mum. I’m exhausted all the time! Try to be kind to yourself as it sounds like you’re doing so well juggling it all!

[Craighead]

Hi you should feel proud of yourself . Dealing with this disease on a daily basis bringing up your children single handed and working. Remember to have time for you a wee pamper night. I also feel sorry for myself at times but it's okay not to be okay sometimes xxx

[Leics]

I stuck with mtx injections for 10 months of feeling very sick 4/7 days a week. Saw my GP on rheumy advice and got some anti sickness tablets which helped for 5 minutes. I’ve had to chuck the towel in with mtx so awaiting a new drug. My advice don’t put up with it for too long I gave it my best shot and suffered needlessly. I found that having covid in January made mtx side effects worse and stopped it working too. It depends what you can live with I suppose.

[Sapphire1701 in reply to Leics]

thank you.. I feel like I need to stick with it for a while, on my 3rd drug in 6 months…just gets frustrating with nurses / consultant when they say, oh you shouldn’t have side effects for that long etc.. makes me feel like I make it up..

I can live with it to some extent, if I accept a lesser quality of life.. maybe is still early days 🤞🏼

Covid is what triggered my RA in the first place!!

[Leics in reply to Sapphire1701]

That’s what I thought and I stuck it out for a further 4 months until my husband said you can’t live like that still in pain and swollen hoping that the mtx will kick in again. It was the reality check I needed but I felt like a failure. Saw my consultant and he said I did the right thing hence a steroid injection to tide me over until new meds can be sorted which will be a JAK.

[grumpygirl]

I think what you describe are all well known side effects which is why although MTX is the go to drug many people don’t like it. I was on it for some years and varied from 10 to 25 mg. The higher the dose the worse I felt. I am now on baricitinib and am giving MTX a break. I have noticed a huge difference in my overall well-being. No more days of nausea and exhaustion. No more really low days. However I may find myself back on it if things degenerate. Make sure your rheumatologist knows how you feel maybe keep a diary and try and ensure relatively quiet days immediately after your injection. Good luck.

[Sapphire1701 in reply to grumpygirl]

oh wow that sounds like the dream..I’m always exhausted, feel very low at times (quite acutely after MTX).. just really up and down. And as I start feeling a little better or less exhausted, and I do more, I’m just shattered again and the pain returns..

but I know this is still early days for me and I think I’m still adjusting x

[grumpygirl in reply to Sapphire1701]

Keeping a diary is a really useful tool for reasoned discussions with your team. If your symptoms do not improve given your responsibilities I would be requesting biologics so that your overall situation does not overwhelm you. I would always try and remind myself after my injection that the lowness of mood and nausea were temporary. However if you are working and have children it is hard to take it easy and the loss of several days every week to side effects is a heavy price. Do not be afraid to be firm with your rheumy they will want you to exhaust all DMARDs first and biologics have to be justified by them. Took me several years but you will get there I am sure.

[Sapphire1701 in reply to grumpygirl]

A diary is a really good idea.. I will do that, because yes losing 2/3 days per week is not ideal. I have been taking it over the weekend, but then spending most of the weekend feeling terrible snd being a useless mother! I will keep that diary and yes will keep in touch with my team.. I’m lucky that my rheumy team locally are very responsive.

[Rusticgarden]

Are you taking folic acid while on metho

[Sapphire1701 in reply to Rusticgarden]

yes I take folic acid 6 days.. so not MTX day..

[cyberbarn]

3 drugs in six months? I have had that over two years because there is such long waiting lists in our area for rheumy appointments!

I initially didn't feel too bad on MTX. And my PsA got better. But then after six months things started getting worse again and I was having stomach pain four days after the injection and it was getting worse by the week. So it wasn't working on the PsA and was making me feel ill.

I stopped taking it for the covid booster, and many of the symptoms except the PsA ones stopped. I didn't start taking it again.

There are many drugs to try, it isn't worth putting up with one that isn't working if you can try another one.

[Sapphire1701 in reply to cyberbarn]

I’m aware I’m very lucky, our Rheumatology team locally are excellent (I’m in Devon) seen religiously every 3 months, if not sooner. Had a flare and a huge bursitis lump below my knee and was seen sane day, by the whole team! It seems a lottery from other posts I’ve read, so I appreciate I am fortunate here..

and yes my consultant has said there are many options to try, so I will see how it goes next few weeks..

[cyberbarn in reply to Sapphire1701]

It sounds like they are using a method called close control. It has much better outcomes for patients!

[Garnacha]

I had tablets for over a year & felt dreadful so switched to injections hoping the side effects would ease, after 18 months I told the rheumatologist I couldn't stand the nausea, hangover feeling, exhaustion or not being able to string a sentence together most days anymore, I wanted some if my life back, was switched to sulfasalazine instead which on the whole works better along with hydroxychloroquine, etoricoxib, lefluminode & gabapentin.

There are many others though who it has worked miracles for so I guess you have to give it a shot (no pun intended 😉) x

[cyberbarn]

I have just got back from my 3 month rheumatology appointment which was four months late. Even though I explained about the side effects I was getting with MTX, she wants me to keep taking it because I do not qualify for any other drugs. 🤷‍♀️I would rather have joint pain than stomach pain and headaches. So that's that!

[Sapphire1701 in reply to cyberbarn]

oh no, I’m sorry to hear that.. the irony of medication to keep you well, but just makes you feel worse.. I feel for you x

[Gillybob19]

I have had similar side effects with tablets and injected methotrexate too. I tend to lose a day or two feeling dreadful. My team decided that 15mg was my maximum if I could put up with it long term. However in the 4 years since diagnosis I've also tried hydroxychloroquine no effect, sulfasalazine awful side effects, adalimumab bad skin rashes side effect, benepali helped quite a bit but not completely, still had painful joints, baricitinib did nothing at all for me and now I'm waiting on Abatacept! Methotrexate works for me to an extent so I'm scared to stop it. I really don't want to go back to being unable to do anything at all as I was pre diagnosis. I couldn't clean my teeth or get dressed without help and I'm a single parent of young teenagers who are autistic, not fun lol. Always talk to your team, phone the Rheumatology nurses in lieu of an impending appointment and be honest with them and yourself. A diary is a good idea as already mentioned plus if you still flare document the swollen joints with photos so you can show the Rheumy. Half the time I'm having a good day when I see the consultant and they only understand how I've been when I show them my camera roll 😆. It's hard to be a single parent with this disease, look after yourself.

[Sapphire1701 in reply to Gillybob19]

wow.. bless you, you certainly sound like you have been / are going through the mill. All those medication changes, so tough. I’ve tried sulfasalazine but it didn’t really work and I barely slept..

I guess methotrexate works for me too.. well clinically in terms of DAS scores, crp etc.. likewise pre medication I was really struggling.. mine was my knees first..could barely walk or bend, then wrists.. now the swelling is pretty much gone, except for my right forefinger quite randomly! And the fatigue, oh my god the fatigue.. that hasn’t changed. seems that’s common..

it is tough isn’t it when you add in parenting alone and additional challenges. Is tough for everyone in different ways.

You look after yourself too, thank you for sharing x

[Mmrr]

MTX left me feeling ill. Oral tabs, injections, various dosages, folic acid 6 days a week....It didn't matter.

I was nauseous, never off the loo bowel wise, lethargic and generally quite ill feeling for 3/4 days after medicating.

After 11 months I said no more to rheumatology and after much deliberation was changed to biologics.

If the medication does not suit you, don't suffer in silence, contact rheumatology and let them know or they will assume all is well.

[Marionfromhappydays in reply to Mmrr]

I'd second this, RA sucks enough without MTX kicking your arse too.

You've given it a try, of it carries on I'd tell your rheum team x

[Sapphire1701 in reply to Mmrr]

so reassuring that it’s not just me! Still feeling sick now, and injected 5 days ago..and have zero appetite at all.. so yes very lethargic. It’s just rubbish isn’t it..

I’ll call my team next week, though prepared to keep going for a little longer. Maybe it will lessen as I adjust. But yes I won’t suffer too long!

Thank you x

[Lex54]

Hi I'm similar just now and recon it's been exacerbated by stress at work and a family bereavement. Make sure you take regypain relief and rest when you can. I try and go out on my e-bike or walk but have seen the detrimental effects of not having time to do this. Keep your chin up and be kind to yourself! (Although we're not great at that as Mums!)

Good luck x

[Sapphire1701 in reply to Lex54]

ah I’m sorry to hear that and for your loss.. stress and trauma definitely make everything worse. So imagine very difficult time..

my pain isn’t too bad, just that constant nausea/bouts of sickness and loss of appetite. It’s very exhausting..

and yes agree trying to keep exercising js good. I had surgery a month ago so also still recovering from that, but I try to get out and walk each day, even if just a short one. Makes a big difference..

all the best to you x

[Nana-8]

MYX pills really depressed me for the first two days. The injections took some getting use to. Theu got easier . When the max dose was put in place I had severe daily migraines.

[Sapphire1701 in reply to Nana-8]

MTX made me really depressed when I was taking tablets.. to the point I had a nervous breakdown (combined with other things going on in my life) which is why my consultant too me off. I still get very depressed, irritable and tearful a day or two after the injection, but is not as bad. It’s all the other symptoms with the injection that are so challenging atm! I get migraines too. But then always hsve. Today is injection day, and I’m already dreading it.. but it has only been a month, so we shall see. I’m booked to speak to the nurse next week

It’s good to hear though that it got easier x