Methotrexate side effects : Hi all. I have been started... - NRAS

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Methotrexate side effects

Nellies47 profile image

Hi all.

I have been started on methotrexate 15mg injection for autoimmune inflammatory arthritis.

Took my first one yesterday am. Since 3pm yesterday I have awful nausea, generalised weakness, and itch on arms and tummy.

I have rang and spoken to rheumatologist secretary twice today, still haven't got a reply from rheumatologist.

So I have 2 questions please. 1) . Will these symptoms last long.

2.) Will this happen every time I take my injection or will I get use to it and symptoms get less.

I dint think 8 can tolerate this every week, I've been in bed all the time. I'm disappointed my rheumatologist hasn't made contact re anti sickness meds or something.

Thank you.

Nelly

32 Replies

Some people get used to it and the side effects decrease and some people don't. They will probably offer you folic acid. I take 5mg six times a week, not the day I inject (20mg). I still get nausea after three years and I'm thinking of asking for a change. Lots of people stick with it and it settles. Keep ringing your RA department, they should offer you help. They don't always respond quickly I'm afraid.

Nellies47 profile image
Nellies47 in reply to GinnyE

Hi . Thank you. I have been prescribed folic acid 6 days a week too.

If you can bite the bullet & drink plenty of liquid you will probably find the nausea eases up….which is probably why your rheumatologist hasn’t called you back yet.Some people find peppermint tea helps.

Have you been given Folic Acid to take? If not, if you have a Rheumy nurse in Ireland give her a call on Monday & discuss it.

I do know it’s hard,I spent many an hour with my head over a bowl…..but if you give up on a drug too soon- like after the first dose - you could miss out on getting the really good benefit Mtx can give.

Just dig deep & in two or three weeks, things should feel a lot better…but it will take a tad longer to feel the benefit in your joints.

Nellies47 profile image
Nellies47 in reply to AgedCrone

Thanks for that.

Hi Nellie!

First of all sorry to hear you have this and I’ve been through this as I had a high dose of 20mg and then 15mg and I can’t hack it so I’m on 10mg and you will get to a lower dose :)

Ginger and lemongrass pukka teabags - get some of this stuff and drink it in the morning and then evening. Helps with sickness

Get your RA doctor to prescribe you anti sickness- it’s called Cyclizine …I literally just got this so I’m hoping it will help! I’m struggling to eat so I’ve also spoken to my pharmacy and they have something for me to help … I can let you know next week when I get it if needs be.

You can always email the email address stated on your letter! Just keep emailing and you can also call the nurse! The nurse will help you asap and they will then speak to your RA doctor so it’s best to reach out to nurse too x

Nellies47 profile image
Nellies47 in reply to Shireen10

Hi. Hope you start to feel better too. This nausea is so debilitating 🤢

Shireen10 profile image
Shireen10 in reply to Nellies47

Yup 🙈it’s horrible! Honestly I was feeling sick all the time and was literally in tears because it was too much! I promise it will get better 👌🏽

You have started on quite a high dose but hopefully the side effects will settle.As has been mentioned, making sure that you drink lots of water the day before and the day itself can help. My go-tos for nausea are peppermint (tea and sugar-free Polos) and ginger and I find that eating little and often (preferably before I actually feel hungry) helps too. Luckily I've found that the side effects (both from Methotrexate and Sulphasalzine) have settled after a few weeks and they've really helped my joints so it's been worth it for me.

Nellies47 profile image
Nellies47 in reply to Boxerlady

Thanks that's great, glad to hear it is helping your joints

I am sorry you are feeling so ill just now. I am afraid it is a matter of 'suck it and see.' Everyone reacts differently. I hope it will settle down for you but there are other medications you can take if mxt doesn't suit you. I hope you hear from rheumy soon.

I was surprised I felt so awful on methotrexate and I just felt worse and worse and was taken off it after only three weeks. I hope it goes better for you but if it doesn’t then you can try something else.

Sorry you're experiencing this. Its your first time so bear with it if you can. It should pass once your body gets used to it. I've been injecting a biologic. First 2 weeks I had side effects but after the 3rd jab nothing. If you like ginger that's good for nausea. Good luck and hope you soon fine the benefit of the drug.

Hi, I too went through exactly the same thing when I was originally put on 20mg tablets. The nausea & fatigue lasted 2 days then I’d get a terrible migrane on day 3! I used to take the medication in the morning, so I then changed it to just before bed. (At this time I was only on 1 folic acid per week.)

Eventually it was reduced to 15 mg then 10 and now on injections. I have to say that I dreaded my methotrexate day and would find any excuse to not have to take it. But persevere 10 mg & 6 folic acid a week is definitely tolerable for me. I’ve been diagnosed for 12 years now and I saw the consultant yesterday and there is very little destruction in my joints. I have very few flares and I don’t have them often, so consider myself lucky. Give it some time and don’t throw in the towel just yet.

Good luck

I actually take my methotrexate at night, so I sleep through the side effect of nausea and fatigue. I’m on 25mg and can tolerate it orally, although I do inject my biologic weekly. As others say I would persevere a bit longer, being the weekend you could contact 111 for some antiemetics. There are several available. I use cyclizine but also have prochlorperazine, the other one is ondansetron which is very good but Drs tend to avoid prescribing due to cost. I no longer feel nauseous from the MTX just a little weary the next day. Hope it settles soon

Some people get on really well with methotrexate for years but often have trouble with the side effects to start with. I presume that you are on folic acid tablets except on the day on the injection? The other suggestion from lots of people is to put up your fluid intake of water on the day of the injection and plan to be wiped out that day. And there are many people on here (and many who don't post) happily controlled on just methotrexate.Personally I never managed methotrexate although I persevered for more than a year. The diarrhoea, sickness, mouth ulcers and brain fog finally got to me and I insisted on a change. But life has been better since then!

Nellies47 profile image
Nellies47 in reply to oldtimer2

Thankyou.Are you taking something else now

oldtimer2 profile image
oldtimer2 in reply to Nellies47

I've been on azathioprine for some years now together with a maintenance dose of 5mg prednisilone (more for flares). Unfortunately I developed allergies to salazopyrine and hydroxychloroquine, so had to abandon both of those DMARDs. Since November, I've been on adalumimab (Imraldi biosimilar) which has been absolutely marvellous - I hadn't realised how much pain and disability I had just been enduring.

It is worth just persevering until you find what does the trick for you. One day it will be sorted out which person has which part of their immune system affected and therefore which treatment is best, but until then it's trial and error.

Best place to look at medications is the NRAS website, treatments pages.

I couldn’t take the tablets as they made me really poorly, so I’ve been on the injections for 4 weeks now. First 2 were 10mg. I felt rough, tired, headaches, flashing light migraines, and felt like I’d got the flu. Week 3 was a 15mg injection, I dreaded having it but I did and was surprised, yes I was tired for a couple of days but nowhere near as bad as the 2 previous weeks. 4th one was last Sunday and this week I’d have felt fine except I pulled a muscle in my neck on Tuesday 🤦‍♀️ Just my luck! Because I felt so bad the first 2 weeks I posted on here. I got lots of great advice. So week 3 jab I drank 2-3 litres of water the day before it, the same again the day of it and 2 litres each day after that. It seemed to have worked. I was also advised to have a substantial meal before the jab. So I have my Sunday Roast and dessert. Wait an half an hour then do my jab at around 3.30pm.

Coincidence or not I don’t know but I’ve been fine since doing that. I then Take a folic acid on the 2nd day after the MTX jab.

So I’d say try the advice I was given. But if you still feel rubbish do tell your Rheumy nurse. Log how you feel every day, I have and I can see the change that has happened to me over each week. X

Nellies47 profile image
Nellies47 in reply to Haz58

Thank you all for your advice. I think I'll ask rheumatologist for 10mg and anti sickness meds. I don't want to give up yet. Rheumatologist says imuran another option but that it's not great for joints, so I don't know if it's worth trying, and then there's biologics she's says are next. .Apparently with my liver disease I'm already very limited 😬.

Please God I'll feel a bit better today.

You’ve been given some good advice and things to try already so I won’t repeat them. Do try and persevere as side effects are common to start with on any drug and can dissipate the longer you are on them. 🤞🏻 for you. Do let us know how you go,

Nellies47 profile image
Nellies47 in reply to KittyJ

Thank you.

Hi nelly,I was on methotrexate injections for a while until I decided to come off of it, got so fed up with the side effects,I told my team I wanted something else. Methotrexate is the first thing the RA team try people on and in my opinion it really doesn't work. Ask for something different. Good Luck.

Thank you. Life too short to feel awful

Hi Nellies, I had nausea for years on MTX, but was only on Folic Acid for 1 day a week. Doctor or no one ever said to increase it - and a lot of folk on this forum say it helps with nausea - so best to check that. MTX did a pretty good job for me for years, but 'poisoned' me gradually so eventually came off it. I should have been given different options sooner, when I think back! It may settle with you, see if the nausea drops off during the week, but keep pushing for response from rheumy. Good luck X

Nellies47 profile image
Nellies47 in reply to Blodynhaul

Hi thank you.I'm still quite sick. Infact I'm worse today. In bed all day and I have headache and pain everywhere.

Blodynhaul profile image
Blodynhaul in reply to Nellies47

Not for me to say as a non-medical person, but I would stop it straight away as sounds as if it really isn't agreeing with you from the start. Keep trying the Rheumy & say how ill you are with it. Try phoning the NRAS helpline too on here - they are specialist doctors who you can talk to - the Helpline is further up the page on the right. Take care x

Nellies47 profile image
Nellies47 in reply to Blodynhaul

Hi. Thanks. Have appointment with rheumatologist tomorrow. 😀

Hi,I could not tolerate mexothextrate tablets it used to make me feel so ill like a raging hangover. I took them for about 6months then started reducing my dose to what I can function on because even though we are told we need these medication etc and we know we do we also need to be able to function too and go about daily life. I was finding work and home life a struggle. However, I last seen rheumatologist about 5 weeks ago and I've been put on the injection and so far so good first week was not good but the 2 after have seemed to be ok, still has sode effects but for me more bearable.

You could maybe carry on and see how you feel only you knows how much you can tolerate. I would speak to your rheumatologist/nurse and tell them how you feel. They may increase folic acid etc to try other ways first before switching you over or may start you on something else.

It's so hard I always say I can't live with it and can't live without it (the medication) 🤣😔 that's why I say you need to be able to function on it as best as possible. 😊

Hi thank you. I'm on folic acid 6 days. Just had a horrible weekend, yesterday was the Worst and all night tummy pain ,nausea, headache and pain in all muscles. Feel like I've been hit by a train at full speed. Still feel awful 😖. Going to talk to rheumatologist today , please God I won't go through this again.

Thanks again.

Nelly

Boxerlady profile image
Boxerlady in reply to Nellies47

Hope you get a positive response from your rhemy 🍀

Pretty normal reaction, sorry you are experiencing them. Hopefully this will pass (it does take a couple months)and you get used to the MXT injections. However, if it persists after a 3/4 mths then talk to your Rhumey team. Best wishes x

That’s a relatively high starting dose. The injections are more bioavailable than the tabs, meaning a 15mg jab is more like taking 20mg in tablets, and I think many people on the boards probably started mtx at 10 or 15mg in tabs, so that may well explain why you’re feeling so naff. I’ll be honest and say that my nausea on the jabs actually got worse and worse over time, but for mtx tablets when I was first diagnosed, I found that any side effects improved after 2 or 3 weeks at each dose. The other thing I found helpful was drinking loads of water the day before and the day of, and then taking it at night - I can’t explain why it worked, but I found taking it at night made me feel less rubbish the following day than if I took it in the morning.

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