hi everyone i just thought i’d give an update about switching to injections. i have switched from 25mg tablets to the 20mg injection of methotrexate, rheumy said they would up the dosage if necessary but seeing as all of it is absorbed through the stomach 20mg seems good so far.
i had my first injection today so can’t really comment about the experience yet or how i’m coping with them but time will tell.
i haven’t had my methotrexate for a week as i was switching to the injection and i felt a little better in myself/less tired minus a couple days where i had a headache and felt run down etc. tablet form was not very good for me and made me feel horrid.
anyways, i had an appointment with my consultant and mentioned my fatigue and tiredness and lack of motivation, she seemed to dismiss that it wasn’t my methotrexate making me feel run down and tired or my arthritis itself, but infact my sleep schedule? i don’t have a problem with sleeping unless i’m in pain so i’m not really sure why my tiredness and fatigue is from lack of sleep when i get plenty of it and don’t wake up in the middle of the night/stay awake late etc.
i felt a little upset because i genuinely thought it was the methotrexate making me feel tired and down (tablet form) as i’ve never had a problem with this high intense volume of fatigue until i was put on methotrexate, and i thought arthritis, the condition itself made you tired too? i always try and make sure i get plenty of sleep and drink plenty of water so i was a little confused.
in the end my consultant has suggested 10mg of amitriptyline and some sleep calming apps (which i have tried before and haven’t worked) i was wondering if these injections would make me feel a little better or if it’s something else? blood results have come back fine and my inflammation is low so why am i feeling so rubbish !!!
edit: i also take folic acid everyday apart from methotrexate days, would it be better to just take it the day before my injection now i’m not on the tablets?
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oliviagodfreyxx
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I don't know about MTX but Embrel does the same to me, washed out, exhausted etc for that day and day after. I'm carrying on as it may be a side effect that passes with usage over time. I do not have any problem sleeping but do have pain issues through shingles in July so take Pregabalin at night it does relieve the pain. I'd suggest you keep a diary and go back to rhumbie after a few weeks to discuss it further if no improvement. A lot of side effects do pass.
thankyou i think i may start a diary, it’ll be nice to see if things improve or if they don’t and i can keep a record of it, hopefully this is just a phase and it passes too
Urgh, I feel your frustration. I don't know the answer - I also switched my methotrexate from tablet to injection some time ago, without any issues - but I do know the feeling that your doctor isn't actually listening to you. So frustrating!
You're right - the arthritis does give you fatigue - and I believe it can also be a side effect of MTX, though not 100% sure about that. But where I really can't comment is that I definitely do have sleep issues, and getting the sleep issues mostly sorted did sort out a whole load of other things for me, so we're not in the same boat there!
I also found amitriptyline completely useless some time ago - it would get me to sleep OK, but then I'd wake up and that was that - awake for hours!
it’s so frustrating isn’t it!! i feel like sometimes they just dismiss my concerns and are not bothered as long as i’m on methotrexate, they said there’s nothing they can suggest anymore. just because my inflammation has gone down doesn’t mean i’m all better. i wish there was something to help manage the fatigue!! i feel like i get enough sleep unless i’m on early shifts at work, however it cant be helped as i need the money
Absolutely maddening - it makes you feel like part of a tick-box exercise! Yep, box ticked, she's on methotrexate - job done. Keeping a diary is a good idea though - include sleep each night, amount of fatigue, amount of pain etc. and see if you can spot any patterns - as well as taking it back to the rheumy. Good luck!
i couldn’t of said it better myself! and thankyou for your advice i will definitely keep a diary and track, hopefully it helps, good luck to you also, i hope you feel better soon x
For me fatigue is a symptom of my disease.. fatigue consumes me I am unable to function. I’m on methotrexate 20mg injections for the last 9 weeks. I was on 25mg oral methotrexate have found I’m no longer bloated . I’m very tired the day after injection but it’s different I am tired tired and need to sleep with fatigue I’m living outside my body ( this is the only way I can explain it) I’ve been told my disease is active while this is happening even though my bloods are ok.hope all goes well and you feel better soon
i feel the same, headaches, mind fog, heavy eyes, nausea etc, so tired that i need to sleep as soon as i’m done from work i’m making me have 0 social life. it cannot just be from lack of sleep seeing as i get enough (in my opinion) maybe i need more, who knows, it’s just hard to keep a routine when my shifts at work differ every day/week. thankyou for your advice, i hope all goes well for you also x
Have you asked your GP to check your vit D levels as if this is low it can cause fatigue.
For me the MTX does make me tired the next day, so have to have an extra hour in bed. And generally I know I have to sleep more than pre-diagnosis....so usually in bed by 10.30pm now, and not up until 7.30am. I need 9 hours now, not my previous 6 or 7!!
i’ve had my bloods done by gp and by the hospital and they said they’re the best they’ve been so i’m assuming that vit D is fine, i do get quite a lot of sleep but maybe i need more? i do find laying in till 10/11am makes me even more tired, maybe i need to set a routine up however it’s hard to keep the pace when my shifts at work differ everyday/week
Vit D isn’t a routine test, so check your test results! Do you manage to do any physical exercise? As although it sounds strange, regular exercise helps combat fatigue. Not overdoing it of course, but even a short walk can make a difference.
i don’t have a lot of time to exercise because of work and how tired i feel afterwards and on my days off, maybe doing some short walks in my spare time might help, i also want to start swimming again & thankyou i will check them
I did the switch from tablets to injections aswell due to me not absorbing it. It did take a good 3-4 months before I noticed it taking effect properly. I have sleeping problems as a result of the arthritis and I use it as a sign that whatever medication i'm using is not working right or hasn't kicked in yet. In my experience I didn't find the mtx to be the cause of my tiredness as I had always had sleeping problems.
i don’t have sleeping problems so i’m a little confused as to why i’m still feeling so run down and tired, it wasn’t an issue until i started my medication so i’m not sure what it is seeing as my bloods are fine, maybe the injection will help so fingers crossed
I hope you found injecting ok? I recall you were a bit concerned about it. Let's hope you settle better on MTX taking it this way & you don't have the issues you had on tablets, or if you do they're manageable. Re the folic acid, if your Rheumy didn’t ask you to change the frequency I’d take it that she wants you to remain on them every day except MTX day. For what it's worth I’d be happier doing this, I do in fact! I’m not sure that having one week off MTX would have made much difference to be honest, side effects may have been lessened but some would have remained. Maybe just not taking it helped.
Hang in there Olivia, the amitriptyline might just help in two ways. It will relax you to give you proper restful sleep but it's original license, what it was developed for, was as an antidepressant. So maybe your Rheumy has actually listened to you. We can run on empty without realising with RD it then has a habit of knocking you sideways.
Did your Rheumy increase your tablet dose? I was thinking as you were taking 20mg divided over two days you'd maybe start on 15mg injection.
i was taking 25mg of tablets, 4 over two days and now i’m on 20mg injection form. i’m hoping they work better and the amitriptyline helps as i’m getting pretty fed up of the fatigue and feeling rubbish 24/7, i literally have no social life anymore. i think i’m going to start keeping a diary and note if i’m feeling any better or any worse
Hope things start to work out for you. I describe my fatigue as trudging through tar in the fog. Some days I'm ok and others I'm up to my waist in trudging through that sticky tar! Sending some warm wishes for you.
Personally, and just my opinion - I think your Rheumatologist is wrong, I don't think she is very good at all as she seems to be ill-informed and unsympathetic. No consultant should dismiss your symptoms, you know your body better than anyone else.
I have refused Amitrypaline many times. I just don't feel that it would help me and would cause more problems.
thankyou, me and my mum think the same. she seems adamant that methotrexate is 100% right for me despite how bad it’s been and says that i’m tired because i don’t sleep enough. i’m unsure whether to start amitriptyline or not, 10mg of it doesn’t seem very beneficial
I’ve been on 22.5mg injections for a number of years. I do mine before bed so I can sleep through the worst. I feel a bit yukky for a day or so, but it is still infinitely better than before.
I have issues staying asleep as I hurt. I tried amitryptilene as a muscle relaxant. I had the lowest dose which I had to cut in half as I reacted to it so extremely!! I stopped after a while as it made me so sleepy!
About 3 years back I had extreme exhaustion, my GP tested my vitamin D levels, which were low. I take a supplement now all year and have never felt that bad again since.
I walk upwards of 10k steps a day. Exercise has helped me the most - I swear my cocker spaniel is my best medicine! I was told I can’t do any more damage by walking, and after a few miles I feel so much better physically. Yes, it hurts sometimes, but I walk through it. The benefits to mental health are fantastic too.
It took me a long time to find what is best for me, keep positive it WILL get better xx
thankyou very much, i want to start swimming again and walking more, maybe persuade my parents to let me have a dog so i can take it on walks 🤣 i’ll look into my vitamin D levels!! xx
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