I was wondering what others experience has been using Methotrexate. I’m currently on 20mg which I self administer by injection. I’ve been using it for about 8 months and still suffer from moderately painful headaches that start within a few hours of the injection but subside after 24hrs. It’s been reasonably effective in controlling the inflammation but certainly not as effectively as the steroids I was prescribed initially.
Tim
I have only been on methotrexate for 14 weeks, so I’m a newbie! I inject on a Monday and was finding it ok at first but when the dose increased I found the side effects started on Monday evening and lasted throughout Tuesday. So much so that I felt like I had a really bad hangover without any of the fun of a night out! My rheumatology nurse increased my folic acid, to six days a week, and I’ve been much better this last few weeks. I now just get a slight headache around teatime on Monday which is solved by taking two paracetamol.
Inflammation is much better and joints less painful but still can’t make a fist (not sure if I’m meant to be able to at this stage). Due for review next month.
That’s my limited experience so far - I’m sure you’ll get answers from people far more experience with the drug than me.
I have taken mxt for 21 years. I have been on various dosages, the highest being 20mg. I found 20mg to be a bit high and didn't feel great so was reduced to 17.5mg which I have been on for many years without any problems. I hope you get sorted soon.
Hi, this is so good to read. You cope well with MTX, apart from 5mg folic acid 6 days a week, which I am guessing you take?? Or not? would be interesting to know please! And also do you have any other tips how you cope so well with side effects that most have on MTX, help will be most grateful please. Best wishes
I only take 1 folic acid tablet the day after mxt. I haven't really had side effects apart from hair thinning. I always take mxt before I go to bed. I was told at the start that it is better to take it at night as I would sleep through the worst of any nausea but to be honest I think I am just really lucky that I have never had nausea with it. Sadly, we are all different and experience different side effects with different medications. I hope your issues settle down.
Only 1 folic acid per week is amazing! That is really good to hear! Maybe getting the right amount of folic acid per week could be a key. It used to be 10mg a week of folic acid after the MTX taken in 2009. Times have changed so much! You may know this? Is it ok to drink some alcohol at times when on MTX? And I have read somewhere that the Sun and too much high weather temperatures and too low affects the illness?
I used to love the odd glass of wine or 2 or 3 but the minute I started on mxt I gave up alcohol altogether. That is 21 years ago and I haven't missed it at all.
Super, great advice! Best wishes to you
Are you on a biologic too? Or another med with MTX?
No, just mxt but on other medications for different conditions.
Thanks
I have a couple of drinks a week and been OK for years.You need to be careful in the sun as you will burn more easily.
High pressure and /or humidity do affect some of us
I was on methotrexate for 6 months. Once I upped to 20mg I felt rubbish for a couple of days, like headinaspin said it was like I had a really bad hangover, headache etc. They upped my folic acid from 1 a week to 6 a week (not to be taken on injection day. It helped a lot. Unfortunately it gave me tummy problems after 6 months so I was taken off it. Contact your Rheumy nurse or Rheumatologist they will help you.
I’ve been on various doses over the last 10 years - as high as 22.5, currently 7.5.
I inject before bed and have found that the easiest. I tend to sleep through the initial yukky feelings.
I think the body tolerates it better over time too.
I assume you are taking folic acid 6 days a week? That helps too.
Hi, Nedical61, I have been on tablets that I could not tolerate, and I have been on injections for about 5 years. They put me on 25, but I was getting headache, bad stomach cramps, and feeling very unwell, reduced to 20 not yo ved m, just the odd feeling sick, but I do bake sure that I drink a plenty water the day befor and the dayof my injection find that helps a lot with side effects, good luck finding out your level. Take care and stay safe.
I’ve been on MTX since 2019, my dose has changed over the period, currently 20 mg though on occasions I have nausea following the injection but this subsides - ginger helps to alleviate the problem. The side effects are a small price to pay for the benefits of MTX in controlling my RA. Good luck.
I still get mild headaches after nearly a year. I really dislike them for some reason - I think it's the type of headache, that all-over pressure type. They don't last long. The mild nausea I can deal with because it doesn't stop me doing anything. But overall I have less pain on methotrexate so I put up with it. Check you're taking enough folic acid.
Steroids are great in the short term but really not good for long term use and will cause more problems than they solve. I guess the point is that we're never going to have it easy, it's always going to be a trade-off. The best thing we can do is surround ourselves with supportive and understanding people, make extra effort to avoid stressful situations, do nice things for ourselves once in a while.
steroids are great for a quick fix when we are having a massive flare, but the side effects can be intolerable plus they effect your bone density. I guess it’s like antibiotics they are great for the symptoms but you cannot stay on them too often or our systems will have nothing to fight with. Same with all meds, I was on sulphasalazine for 15 years very successfully and then it stopped working, my body had grown too accustomed to it. Methotrexate and me did not work, and in 4 years I was given 10 different drugs till I found what worked for me. All I can suggest is if you don’t think the drugs are doing what they should do talk it over with your rheummy team, drop them an email or phone. Keep a daily log of your symptoms as it helps them make a decision. I was lucky as you couldn’t hide my side effects as they were very visible. Hope this helps
I took Mtx very successfully for a long time …25mg Mtx + 6 x 5mg FA per week.
If you can hang on a bit longer the Mtx headaches often fade away…speak to your rheumy nurse for advice …..and make sure you are taking the correct dose of the Folic Acid.
Drinking plenty of water to ensure you are well hydrated …..will also help…plus do remember……. the majority of people on Mtx do really well…but are getting on with their lives…so don’t bother to say so…..it’s usually only the unlucky ones who are unhappy on it who write in.
Hope things get better for you.
Hello Medical61I was first on tablets and frankly the 24 hours I felt quite odd. Then my gut didn't like it so I started injecting and all of a sudden my bloods improved. Every once in a while they would increase it but my liver was never happy with that. So I've settled on 12.5mg and I seem to tolerate it better. I do take 5mg folic acid 6 days. I once cut back my folic acid to 1mg but my GP said it helps the liver manufacture the MTX so I take the 6 days worth and it helps with side effects.
We are all different. My main side effect would be feeling a bit thick and foggy for the 24 hrs and by the next day I feel normal. I'm 65 so maybe age is also affecting how I metabolise it all. I have been on it for 12 years.
Good luck.
Hi, I am on 25 mg and have been for years, for two days after I still get extreme nausea and diarrhea x
I been on MTX 15months, injecting 20mgs for the last 8. I had hydroxy quickly after I started injecting and after 4 months I had a review and I was told I was close to remission; with low diease activity and low number of tender joints. Very close to how I felt on the steroids, with a very occasional mini flare lasting 36hrs at a time and only affecting a coupe of joints.
My feet now can be pain free which only happened when on the steroids immediately after diagnosis. I was in them several months til MTX kicked in.
I have had very few side affects, hair thinned a little at first but grew back after a couple of months. I started on 1 folic acid a week, upped to 3 for mouth ulcers prior to injecting then up to 6 a week a couple of months ago as ulcers came back about 5 months after starting injecting. The additional folic acid worked
I inject in the morning and have not experienced any fog/fatigue/sickness/headaches. I do not drink very often but have been in a few nights out and drank alcohol without issue.
My bloods have been good throughout.
Everyone is different so can only comment on my experience. Hope that helps.
nothing is better than steroids I’m afraid but no I was fine on methotrexate took about 3 months to settle down
Thank you so much for all your informative responses and discussion. I’ve concluded that I may still need a steroid injection in my shoulder so it’s targeted. I had one a few years ago and it gave effective relief for a couple of years. I’ve got quite a lot of damage in both shoulders from previous operations and hydro treatment to remove adhesions. It’s 24/7 pain at the moment even after taking Dihydrocodeine. I would be in agony if it wasn’t for the painkillers and methotrexate.
Hi been on methotrexate about 16 years at first every few months for a day or so used to feel like I had a bad flu this lasted two or so years also mouth ulcers and skin rashes but I persavered now have no side affects
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