Started methotrexate

Just started tablet form of methotrexate… finished sulfasalzine & put onto this! Does anyone have any experiences of it…? What can I expect? Good? The bad…? Any side effects to be wary of? Grateful to hear of any experiences :slight_smile:

There is definitely a lot of information available on methotrexate, and everyone’s reaction will be different. Key to hopeful success is making sure you are drinking lots of water, and taking folic acid supplements. This may vary, how much you need. People may take up to 5mg/day. You can search the discussion for methotrexate (MTX).

My personal experience? I stayed on it for 6 months, increasing over time, and did not have much response to it. I was switched to leflunomide with better impact. My mom took MTX and noticed a difference within the first month or two, with none of the nausea that I had. By the way, many people find that nausea disappears if they switch to injectable MTX. If I have to switch back, that’s what I’ll do.

I started with the pill form of Methotrexate in late September 2012. About a half hour after my first dose, I was in the bathroom. The second--or third, I can't quite remember--day I woke up with morning sickness and more bathroom, I called my rheumatologist and said next. That Friday, four days later (?), I started injectable MTX. I think I started with 10 cc, went up to 40 or 50, then back down when I added Humira in early 2013.

I never quite got rid of the GI side effects. Whereas the MTX got me mostly free of pain most days, the best results occurred after I had left shoulder replacement surgery in August 2013 and I started injecting Humira every ten days sometime in October/November of that year.

I told my doc I hope never to go back on the stuff again. Like I said, never got rid of the GI side effects. I got really, really tired of being afraid to go anywhere. I also injected on Friday night, spent Saturday sleeping and usually took a nap on Sunday also. I'm not doing any of that now. I have a life and don't spend it sleeping.

Hi Newbie UK, I think the tendency here in the UK is to start the folic acid with quite a conservative dose; I think I started on just one pill a week on a different day to the methotrexate. But you can take it daily, except on methotrexate day. By the time my folic acid was increased it was way too late for my poor stomach, even once I switched to injectable methotrexate. I also got the terrible fatigue. Ultimately it wasn't the medication for me and like Stoney I moved on to leflunomide which was pretty good, although I had to stop that for other reasons.

Methotrexate is a game changer for lots of peoples disease so if you do start to get side effects try to manage them as best you can ..... take your methotrexate before bed as this can help you sleep through the side effects, take max doses of folic acid and drink, drink, drink ....... at least try to stay the course for the first three months to see if you have any symptomatic improvement. BUT don't be afraid to ask to change to injectable as the difference can be night and day.

Let us know how you get on and shout if you need support.

Hey Newbie! Happy Friday. I began taking injections of MXT about a month ago. I must admit, I hate it! I feel so loopy and jello-y after taking it. Sometimes I can barely hold my head up. I will usually go to sleep right after my injection. I had to skip last week bc I was sick with a cold and they tell you not to take MXT if you are feeling sick. This week's dose was horrible! I felt so bad afterwards and the following morning was the same. Not to mention my skin is flaring up and very painful. I'm not sure if its flaring up bc a skipped a dose of MXT last week or what...but I must say, my MXT experience has not been an easy one so far. :(

I have been on mtx since September. I also started folic acid at the same time. Other than fatigue the day after I take it I have had little Or no other side effects. I wish you luck and hope you do well on it.

I have been on methotrexate, the pill form, for 2 years now. My side effects have been few. I may get an occasional headache, but I think that is because I am not drinking enough water. My rheumy is a little more aggressive that some. I have never stopped taking my weekly dosage even if I had a cold. I was on 6 pills a week and have been cut back to 4 for a while because my white blood cell count dropped way too low. Hopefully this will work well for you.

Hi - I am not sure how much you take but I started with 2 - 2.5 mg and have increased it over time and am on 6 a week. I haven't had many side effects and am not taking folic acid (although I may go on it since that seems the norm). Anyway the only side effect I have found is a pain in my left lower thumb on the top of my hand. When I take my gabapentin, it seems to go away within 2 days. It isn't very painful - just mostly annoying. But I have seen a big difference in my pain, although I do have break out pain occasionally. So as they have said earlier in the posts, it depends on the person how it affects them. But my opinion is to start with this (as it is covered by most insurances) and most people start with it. I have been happy with the results so far.....

I started on tablet form in November and switched to injections in January. No sickness side-effects at all! Very tired the day after taking and have pretty bad headaches for 4 days a week with it - most people don’t seem to have this. Drink lots of water for a couple of days after taking - that helps! I also take 5mg of folic acid x 6 days a week. Good luck with it

Soo…After first dose 7.5mg mtx it didn’t go so well… headaches, nausea & runs to bathroom…definitely more tired than usual! Taking 1x 5mg of folic acid also…
By docs recommendation my 2nd dose is going down to 5mg mtx with the 5mg folic acid to see if I tolerate it any better. Also prescribed some med for ‘settling’ my nausea see if this helps.

It will hopefully get better as you get more used to it! Starting low qnd building up is probably a good thing so well worth trying. Otherwise maybe the injections will work better with less side effects - they’re really easy and don’t hurt at all! I taught myself how from the internet although I am used to injecting insulin every day so don’t have a thing about it anyway. Hope the next dose goes better for you…

Not sure how I’m getting on…still on lower dose of 5mg… r whether 2b concerned about any ‘symptoms’ if there side effects r just run of the mill things…not to worry over!
I’ve felt ill the past 4-5 days… headache past couple days… I’ve such a thirst I can’t seem to get enough fluids into me past 3 days… as I said I’ve real sicky feeling & ‘weird’ sensations running through my stomach…
Anyone else experience this on mtx? Or am I maybe just getting a bug r something…?

Tea, unfortunately these are all the common symptoms with MTX. Hopefully they ease and improve because you are still on a low dose. Are you taking pills or injecting?

Hi Rachael, im still taking tablet form of mtx! Im really hoping ‘this’ eases & asap…!

I do enjection's once a week of methotrexate it's so much better. I started out on pill form and got very nausea and upset stomach. I also do folic acid everyday that's important. It's helped with my arthiritis. It has the less of side effect's.

Well, surprised you are staying on such a small dose but if you are having SE upping it won’t help. I took it fine until I hit the 20 mg dose. I suddenly developed vomiting and migraines that lasted 2-3 days causing me to miss work. Even though I took it on Saturday morning I was barely functional on Monday. Rheumy dropped down to 15 mg again but the migraines would still come heavy tummy was tolerable but not great. Finally stopped taking it. Never went to injects but after a month it was working on the pain for sure. Its a balancing act that you have to weigh the SE over benefits. As soon as my work attendance improves I plan to possibly try again in inject form. Many people on this site get tons of relief from it especially when paired with a biologic. I am on Enbrel now but if I could tolerate MTX I’m sure the two would make life much better. Hope it goes well, finding the right meds is hard and takes forever it seems. Still struggling myself but keep having faith.

Hi there Newbie UK, sometimes the nausea/tummy troubles only ease with a higher dose of folic acid and injected mtx. Why don't you give your nurses helpline a call and see if they can get you switched over to injections asap. I believe the starting dose for the pre-filled syringes is 7.5mg. Ask as well about taking folic acid every day except mtx day. If mtx doesn't work for you (side-effects or inefficacy) you'll then be partly qualified to move on to biologics ... the rest depends on your swollen/tender joint count. The current NICE guidelines are posted in Cuppa House (UK group) if you want to have a read ... let me know if you need any more info.

I tried MTX for six weeks. It didn't help my PSA at all but it did suppress my immunities so much that I was hospitalized with a kidney infection that took over two months to heal. I had never had even a bladder infection so this was a big surprise. Now I am not on any med except anti-inflammatories and after a year I am still too afraid to try it again. So...watch out for infections. Take them seriously.

Hi everyone! Soo after bout a month of no mtx I’ve had my first injection of it! 24hrs later…not to jinx myself…I feel relatively ok! Whereas on tablet form I could guarantee I’d be feeling side effects of some form by the 24hr mark! Maybe this is the start of ‘‘a good thing’’ :slight_smile: tho doc/ nurse is still keen for me to be on folic acid only once a week…I’ll see how it goes…!