Hi everyone,
My first post here and I’m on week two of methotrexate. The day after I take it at night, I’m completely wiped out. Feel sick and as if I’ve got the flu. Does it get better as I’m not sure I can cope with this 😞😞. I know it’s early days and it will hopefully get the RA under control
Thanks 😊
Hello and welcome to the group Kati66. I’m sorry you’ve had to join us but I hope you find it useful. You’re experiencing a very common side effect of methotrexate and side effects tend to get less the longer you are on a med. Have you been prescribed folic acid as well as this can help with effects you’re feeling? If you’re not and things don’t improve it’d be worth talking to your rheumy nurse about it. 🤞🏻🤗
Yes it does get better..…for most people it gets a lot better..but be kind to yourself, don’t try to rush things.
Nothing about RA meds is easy at the start…but I’m afraid it does take time…..I know it will sound ghastly..but 3 months is not unusual before Mtx kicks in …….but you shouldn’t feel as bad as you do now for much longer. .
Speak to your rheumy nurse..she is the best judge as she deals with people like you all the time & will know if it’s likely Mtx is for you or not.
Make sure you take the folic acid, & your nurse may even give you some anti nausea meds,…but hang on in there…it will be worth it.
Hiya Kati66, welcome. You have introduced a strong med to your body & as with all they potentially cause side effects. Fortunately in a way the ones you describe are common & often diminish the longer you're on MTX. That said I've been on MTX 13 years & am still more tired the day after, less appetite too, but for the positives it brings I can cope with that.
When I first started tablets I was advised by my Consultant not to take the whole dose in one go but to space them out with meals, it would be less for my body to cope with. My dose was 15 mg so I took 5 mg with breakfast, lunch & evening meal. If side effects keep you awake then swap from taking them at night, another suggestion given me, so it didn't disrupt much needed restful sleep.
You'll have been prescribed folic acid. They're intended to ease side effects so take them as directed. If it's less than 6 x a week then you can ask if it can be increased. Or, you could ask your GP if he thinks an anti emetic would help. I only had 5 mg weekly to begin with but when I has some hair thinning it was increased, which helped, or that particular side effect resolved itself the longer I was on it.
Be assured though, how your feeling isn't unusual & most likely will ease in the weeks to come. I take it you've been advised that in common with other DMARDs MTX isn't quick acting, so don't worry if you don't feel benefit straight away.
I hope some of this is helpful & you find being here of help too. 😊
Yes, it does get better for more people. Took me about 3 months and I still plan a half hour lie-in the following morning so I don:t stress.
my Rheumatologist told me to take one Robitussin the next morning, it helps
I'm intrigued, how does Robitussin help you? Unless it's a different thing in the US, you do say take one. Here in the UK it's a cough medicine/relief liquid you can buy otc.
Yes it’s the cough medicine, he said it helps the nausea etc the morning after you take your methotrexate. I think it helps me, sometimes I am not sure, I am so sick and fatigued. He also has me taking two grams of folic acid daily. I just added sulfasalazine because I can’t take prednisone. I was already feeling very sick before I started the Methotrexate, but it has definitely helped my body pain.
Well you learn something new every day. Here in the UK we're prescribed 5 mg folic acid per day to help ease side effects, I take 30 mg per week. I'm also prescribed an anti emetic for nauseas when I have dose increases as I’m often nauseous for a few weeks before my system gets used to the increase. Have you mistakenly typed 2 grams (2000 mg)? That's an awful lot & I dare say would near enough counteract the MTX. Really pleased you feel the MTX is helping you & hope once titre up to the optimum dose the SSZ helps even further.
correct, 2 mgs/day
Right. Thanks for replying.
Thank you all for the warm welcome and friendly advice. I have been taking Folic acid for 6 nights so hopefully that will help soon. I’m also taking 5mg of prednisone, which the rheumatology nurse said I have to stay on until the Methotrexate starts to work. I was trying to explain to my mum what the day after metho feels like and it’s like a really bad hangover! I haven’t had one for years though as I stopped drinking about 8 years ago. I’m seeing the nurse again soon so will mention the adverse affects to her. I’m finding this help page really useful and learning things I didn’t know. Thanks again to you all 🤗🤗
You summed it up in a nutshell, like a hang over. This is exactly how I felt when I started on methotrexate over 25 years ago. I still take it, it is a game changer if it works for you, which it does for most people. The side effects will diminish, it is hard on your liver that’s why it feels like a hang over and why you have been advised to be careful about alcohol consumption and will be having regular blood tests to check that your liver is ok. There are other effective drugs however they all have side effects, this disease needs powerful drugs to control it. Give it a bit more time.
There is a common term, an MTX hangover. So maybe that reassures you somewhat. They do tend to ease the longer you're on it & it is early days for you so there's time. That gives some hope, hopefully!
It's also quite common to be prescribed a corticosteroid, especially with your first DMARD, just as your nurse says. It's used as a bridging med in this instance. I had one as well, though mine was deflazacort (I wasn't diagnosed in the UK & it was favoured over prednisolone).
You need to let the Rheumy team know.
There are many other meds, you don’t have to suffer these side effects.
Many people manage on Methotrexate really well, for me those side effects got worse the longer I took it, for others it gets better. The key is “I can’t cope with this” , that is the point at which something needs to change.
Go gently
Hi Kati66. I agree with what others have said and can't really add to that but just want to wish you all the very best.
My advice would be to keep trying for a few weeks. For most people the side effects do improve to a bearable level (and I know some people who experience no side effects at all). However if after several weeks the side effects haven’t improved or if they are getting worse please contact your rheumatology team there are plenty of other drugs you can try. Personally I tried Methotrexate tablets and injections but I couldn’t tolerate them but I have taken other drugs with no problems at all.
I was on it for 2 months along with prednisone before we stopped it. I just couldn’t handle it. I was tired and flu like with a terrible headache and dizziness. I also lost about 1/3 of my hair, now I have a lot of hair so it was jarring but I didn’t go bald. I’ve been off of it for 6 months now and my hairdresser said my hair is back to pre methotrexate. Good luck.
I was started on the tablets but couldn't tolerate the side effects so switched to the injection. That took away a lot of my side effects except feeling queasy . My specialists (dermatologist and rheumatologist) advised me to take the injection at night then have a strong coffee in the morning or dark chocolate for two days. Apparently a study has been done and the findings were that caffeine helps to ease methotrexate side effects. Since doing that I have felt much better!
Didn’t know that! Cheers ☕️
That gives me a good reason to have some dark 🍫
Hi Kati66...I know exactly how you feel its not pleasant at all. The tablets made me feel dreadful but there is an injection too, easy to do so don't be put off by that , that took some of the sickly fluey feelings away, so maybe ask about that if it continues. I eventually stopped methotrexate as my hair was falling out and that really troubled me in a big way. These drugs are powerful and can cause distress but they also have wonderful benefits from this disease we are all trying to get to grips with. Stick with it and get some advice from your rheumatoid team , there are lots of other options available. Have a good day. X
I've been on mtx for over 3 years now. At first I had the mtx hangover for a couple of days after, and over time that eased off. Now I hardly notice it. And my RA is well controlled.I have folic acid the other 6 days.
What works for me is a good meal, then take it last thing at night. Plenty of water/weak tea (that's how I roll!!) the next day.
I hope you get as good an outcome, but if the mtx hangover doesn't ease off, do ask your rheumy team what can be done.
As is often said here, we're all different.
Let us know how you go on xxxx
Make sure you take your Mtx with a ‘proper’ meal. Also ask your GP for an antiemetic.
It’ll all take a while. They usually start you on a low dose then increase incrementally.
This is tough for you. Ask IAPTS for some counselling and read all NRAS booklets etc. It is a marathon not a sprint. 💐
I’m also fairly new to this! I’m on week 6 of methotrexate and have a ‘hangover headache’ for a few days after taking it. Thankfully, no nausea. It might be worth ringing your RA nurse for a chat, they might hav some advice. I’m hoping it’s something that will get better over time. Let’s hope the medication works for us both! 🤞
Hi 👋
As others have rightly said, it is a common side effect. I’ve been on it for 4 years now and I’m always fatigued, especially the day after I take it. But I’d rather that than have the pain.
👍
hi Kati66,
I’ve been taking Methotrexate for over 4years, I take folic acid 4 days a week but not on methotrexate day. I have suffered terrible side effects as you’ve described, I’ve found it doesn’t matter whether I take it at night or in the morning I still feel the same . Over the last month after taking methotrexate I’ve drunk plenty of water, black coffee eat nothing until after 12 and avoid carbs and junk food. I just stick to salad and chicken /fish for a couple of days, have to say I feel much better , hardly any side effects !!
I have been on MTX for 4 months now. I did feel ill on the day after for the first month or so but now I don't feel any different for taking it. My doctor started me slowly on 15mg working up to 25 mg over 4 weeks. I have 5mg folic acid every day that I'm not taking MTX. One thing I found in the early days was that I had to give up coffee as that made symptoms worse. I do drink coffee again now without problem. I also eat low carb which may help. I tend get the flu like symptoms mostly when my RA is worse.
Hi Im starting mtx this week and I’m nervous about the side effects. Ive been on cimzia for about 6 months now (for AS) and i finally feel better and my fatigue is just about gone. I have pain in my smaller joints and the dr thinks mtx will help. But like i said I’m finally feeling better and dont want to deal with new side effects. I also had a lot of hair loss around the time i was diagnosed and it has finally grown back. Thanks for sharing and I hope your side effects get better. Although I dont want anyone sick it is helpful to know we are not alone
I am also newly diagnosed, although with psoriatic arthritis, and also in week two of MTX. I will be interested to compare progress. My side effects are mostly fatigue and a dry cough...which was quite bad and caused muscle pain. I'm reassured most people say the side effects lessen with time. For me, the key issue is: will it work and how well and when....6 weeks seems a long way out...will it improve gradually any time before before then....or only from them...if at all?
Thank you v much ..let's hope!
Hello & welcome lots on here know how you feel. I was on MTX tablets at first and the nausea was awful. RA already caused me fatigue & MTX does too. Sometimes I feel flu like.
Now ten years on RA is under reasonable control, I take pre-filled pen injections & have it down to a fine art. Take my anti sickness meds about half an hour before the injection which I do just before bedtime. Then I have water , some times tonic water by my bed to drink in the night. Also I take 1 co-codamol which helps me sleep the worst of my symptoms through.
After about 3 months you should know if it's helping, contact your help line to discuss your side effects the specialist nurses have lots of good advice to help you.
🤗
Newly Diagnosed with RA
Newly diagnosed and work issues
