Zombie feeling- day after methotrexate...: I’ve been... - NRAS

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Zombie feeling- day after methotrexate...

girli1111 profile image
26 Replies

I’ve been having methotrexate injection, 20mg for about two years now. I have it on a Wednesday evening and I now don’t work Thursdays and Fridays. Some weeks Thursdays feel just like any other day (there’s always fatigue, but that’s my norm) but some days, like today, I feel like a complete zombie, can’t keep my eyes open, not sure if it’s the methotrexate or not, do others have this inconsistent response?

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girli1111
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26 Replies
achyknitter profile image
achyknitter

Hi, I have been taking 17.5 mg methotrexate tablets for nearly four years. Sometimes I get deeply, deeply depressed the morning after I take them but at other times I am all right. I know the depression will clear after a five or six hours but, like you, I have difficulty with the inconsistency of my response to this drug. Also if I have a germ about me it is always much worse for a few days after taking methotrexate.

Kerensa21 profile image
Kerensa21

Yes. I put up with feeling low, depressed, shattered & nauseous for over a year on MTX. I thought this was normal but I don’t think that amount of fatigue should be the norm (didn’t sleep either bizarrely). Noticed a real improvement in fatigue & sleep on biosimilar. Is it worth flagging up to rheumatology how it’s affecting you; I know it’s all a balance & all the drugs are a bit scary but quality of life’s important too. Not medical advice obvs 😊 x

girli1111 profile image
girli1111 in reply toKerensa21

Did you feel that way after every methotrexate dose? I’m thinking they’d be unlikely to change me to bio similar as my blood tests look good...

Kerensa21 profile image
Kerensa21 in reply togirli1111

My bloods were good, joints weren’t tho or fatigue; it’s a funny old disease. I saw lovely registrar who asked what was worse, drug side effects (yep) or disease. I’d had hydroxy too & I’m highly positive for RF & anti ccp but don’t think these change much anyway. I can’t remember now re MTX but latterly got waves of nausea even when they lowered dose 😖 just seemed to get worse with time really hope things improve for you. There was also article on NRAS site on lowering das score for biologics recently 🤞x

Hopefulfuture profile image
Hopefulfuture

Yes I am exactly the same after taking metho injection. I just make sure I rest the next day now. Have also recently added a biologic which just makes me tired. All the best.

girli1111 profile image
girli1111 in reply toHopefulfuture

Thanks for the reply

JFlay profile image
JFlay

Hi, I was only diagnosed early this January with seropositive RA. MTX (15mg tablets) are my first DMARD. I have felt dreadful on them, yesterday I felt I couldn't deal with it anymore so I rang the rheumy helpline and they said to stop taking them as over 5 months is a good enough try with them 🙄 I have my next rheumy appointment in 4 weeks time and they will discuss next steps with me. Feeling a bit anxious as to how I'll be by then ?

girli1111 profile image
girli1111 in reply toJFlay

That’s frustrating, my blood tests seem to show a good response to methotrexate, but this exhaustion (from either the disease or the drug) is ruining my career!

JFlay profile image
JFlay in reply togirli1111

My bloods have been fine too, sadly just can't cope with with the side effects, no quality of life 😟

Kerensa21 profile image
Kerensa21 in reply toJFlay

Took me at least 6 weeks to flare after stopping MTX before starting bios, hopefully it’ll last you out or they’ll give steroid shot to tide you over 🤞x

JFlay profile image
JFlay in reply toKerensa21

Yes the rheumy doctor I spoke to said it should be ok for 4 weeks, hope so 😂 thank you.

Random symptoms after taking methotrexate some days I’m a zombie usually for 2 days sometimes nauseous others absolutely fine. But recently my fatigue has gone to-another level since Christmas my good days are getting less if I get 2 good days a week I’m doing well . I’m down to 1 and half hours a day at work this leaves me exhausted. Had a week off last week to catch up on housework etc nothing doing a zombie the entire week . Just spoke to rheummy nurse she going to try and get me in to see consultant but she said as my bloods are good she doesn’t know what they can do.

Thingybob profile image
Thingybob in reply to

I was offered a biosimilar but only after a mega flare, even though I had the brain fog and nausea the next day after every mtx injection, because my inflamation markers were 'normal'

girli1111 profile image
girli1111

You sound very similar to me. I try and remain positive, but it gets me down at times. I’m fortunate to have a very understanding husband, and a boss whose husband has RA!

Frankiefocus profile image
Frankiefocus

Drink plenty of water the day before and after you take injection and sleep well.. Helps me alot.

girli1111 profile image
girli1111

Actually, I usually do, but may have had less than normal yesterday as I forgot to fill my water bottle at work, good point!

As well as feeling very tired at times during the day, I also get. Brain fog, can’t think straight.anyone else have brain fog?

Frankiefocus profile image
Frankiefocus in reply to

Hi Magmolia I have been on mtx injections 3 months now and have noticed this. Im usualy sharp with my memory but now its failing me. Im learning a new skill set at work and now need to wright a lot of notes incase I forget and my partner has noticed me not remembering stuff. Im 50 now and hope its not early signs of the dreaded A disease tho.

Happygranny1958 profile image
Happygranny1958

Yes I am similar to you. I have my injection of 25mg methotrexate on Thursday evening and Fridays I have an easier day. Sometimes I'm just wiped out with no energy at all and other weeks I'm fine. I now only work three days a week, giving up Fridays and Mondays. I was often having to ring in sick on Friday and then trialled reduced workload on a Friday but in the end I decided to take the plunge and took partial retirement, I am 61.This took away the stress of having to go into work when I wasn't up to it. I definitely made the right decision and have been doing this for a year now. Hope you are feeling more yourself today. X

girli1111 profile image
girli1111 in reply toHappygranny1958

Thanks for the reply, yes, I’m more myself today.... like you I reduced working days so that I didn’t have to take any time off sick, it also means I can book blood tests etc on those days without feeling embarrassed about it! I turned 50 this year, so I do often wonder how I’m going to manage working until I’m eligible for pension... especially as the pension goalposts keep moving!

Happygranny1958 profile image
Happygranny1958

I know, I should have retired last year if they had left things as they were. Take care of yourself. X

Glad your feeling better I’m 52 and I worry about my pension really think it’s unlikely that I will be able to continue to work at this rate unless there’s a medical breakthrough.... you never know 🤞

singlecrochet profile image
singlecrochet

Hello girli1969: YES!! definitely have the MTX hangover for the following 2 days. I do drink TONS of water, take the folic acid and my Dr. also suggested taking HUMIBID daily. She does not understand the why it works mechanism but I did add this daily and it does help---a bit. I get Very nauseous and lightheaded. We've just added humira, so am hoping if that works we will lower MTX dosage.

cariad68 profile image
cariad68

Hello girlie 1969, yes mtx gives brain fog . Also I now suffer from funny feeling in legs. Like they're numb. Excercise helps. As the others have said drinking lots of water after the dose helps with nausea.

girli1111 profile image
girli1111 in reply tocariad68

Interesting as I’ve had numb feeling in my left leg and side of face last couple of days too (I’ve had this in the past and was seen by neurologist who didn’t find anything sinister wrong. Have you remained on methotrexate?

4201 profile image
4201

I have only been on oral dose of Methotrexate since March. I have total brain fog the day that I take it. I now take it after dinner knowing that I can go lie down and not need to function for a while. I also seem to have more joint pain and fatigue the day after. That is something new. Hope you are feeling better.

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