What are the side effects of Methrotexate?

[Agnes7]

What are the side effects of MTX? Going to start it next week. Cimzia biological drugs didn’t work with Sulphursalazine, SULP made me feel tired, brain fog and low iron!! Replaced SULP with Hydroxychloroquine, but made no difference (now that I have given up on trying to become pregnant) Rheumy would like me to try MTX.

[AgedCrone]

Lots of people have no nasty side-effects with Methotrexate at all ....so if you possibly can - swallow the pills, drink plenty of water, take the folic acid every day except the day you take the methotrexate ......and within a few months you should be a new woman.

I know you have probably read of nasty reactions some people have but that is them .....it probably won’t happen to you - just expect to feel better.

PMA is really important when you switch drugs.

Don’t despair if you don’t feel 100 % better in the first couple of weeks it really can take up to 6 months to fully get into your system and start helping with your symptoms.

I was on it for years with no nasty side effects at all - so tell yourself you are going to do that as well.

Good luck...tell us how it goes.

[helixhelix]

I’ve been on MTX for over 9 years now with no problems whatsoever. My hair thinned a bit to start with but after a little bit it went back to normal. These days I just plan to have an extra hour in bed the day after taking it, (which is really just an indulgence now!) and that’s it. It was a magic drug for me, and got me back to normal!

[BonnieT in reply to helixhelix]

What dose are you on? I got so sick a couple of months ago I stopped MTX. I am beginning to feel everything coming back after having had a couple of really good weeks. My rheumy is away til September and my next appointment isn’t til October. She told me if things got worse I could take prednisone and begin the MTX again. I’m considering that now.

[helixhelix in reply to BonnieT]

I slowly built up to 25mg, along with hydroxy and sulpha. But now I’m also on Enbrel so am slowly reducing the dose and am now on 17.5mg.

[BonnieT in reply to helixhelix]

Thanks, helixhelix! My rheumy does want me to consider other options including MTX injections to bypass the stomach issues I had. I wish they could fine a cure for us all.

[Pembrokeshiregirl]

Hi Agnes. I’ve been on methotrexate now for five weeks dose has increased to 15mg and so far no bad effects and best of all its starting to work 😀😀😀 can now walk downstairs normally instead on one at a time and hands working and pain free. Starting to feel like myself again. Hope you feel better soon.

[Angie2212]

I was on MTX for a while, but even with Folic Acid I felt very sick daily. I moved to the injection form and that didn't help either.

I've been on Sulphasalazine and hydrochloroquine for well over a year and have been great up until now where im bruising everywhere and so fatigued its difficult.

Just shows we all react differently to the drugs.

You'll know soon enough if it suits you. Fingers crossed x

[Agnes7 in reply to Angie2212]

I was on Sulphursalazine for 8 months and discovered my iron levels were really low, felt tired, brain fog.... but my Rheumy didn’t believe it was the Sulphursalazine until I monitored my iron levels with my GP, to prove how it fluctuated when I didn’t take the drug - and then I finally came off it, still in pain, but I felt more ‘with it’ I think sometimes you have to trust your own instincts and judge for yourself, after all, you know yr body the best.

[Agnes7]

Dear All, thank you so much for your comments. It gives me hope! I think sometimes you can read too much and the negative comments stay with you. I approached CIMZIA with such a positive attitude, but it really didn’t work. Anyhow, fingers crossed - thank you👍

[Bojedo]

I could’ve easily given up on the Mtx, but it was the postings here of hope and patience that kept me going. After 4 months of working up to 20 mgs of Mtx, we also started Cimzia. That has taken its time to work too. But the two combined are finally working after 4 months together. I can stretch my fingers out, and make a fist. Best of all, my palms and wrists don’t ache all day.

These meds don’t solve this in a few days, or a few weeks. Don’t give up on the Mtx. It can make you feel tired, and nauseous perhaps. It was a long process for me, but taking the med in the evening with lots of water, some carbs, and sleep has been good. There have been some doses that I have had no notice of effect the following days. So the 4-5 months it took to get used to Mtx has been worth the joy of moving these fingers, pulling up my pants, driving a car, even opening a can of soda on my own painfree.

[Paula-C]

I've been in mtx since 2010 and I've had no side effects. Not everyone gets them, it's the most widely used drug for RA so you will see more reports of people having side effects. Good luck.

[Nocciola]

I have been on oral methotrexate for 3 months (15 mg for 4 weeks, 20 mg thereafter), with practically no side effects - there is some barely noticeable fatigue a few hours after I take it, but if I go to the gym I don’t even notice it. I have only had vomiting once, but it was because I drank a flute of champagne at a celebration the evening before, then took the methotrexate the next morning, 8-9 hours later. I threw up 3 hours after that and felt exhausted, and did not feel well again until 2 days later.

Also, I noticed that my c-reactive protein went from 0.7 to 3.1 after 10 weeks or so on the methotrexate. Whether that is due to the medication or my diet is uncertain (I had been at a week-long retreat and was eating fabulous desserts with nearly every meal right before I was tested). I am scheduled for an appointment with my rheumatologist and additional testing next week.

[Hodc]

I've been on its for years, with no noticeable side effects. Only thing to watch is when you have an infection. I'm prone to chest infections, and my gp stops my mtx when it's bad. So as not to make the infection worse.

[Troygirl]

Hair falls out!!

I had to stop methotrexate because it was so bad on my hair!

[Sheenadon594]

Hi Agnes7.

I,ll be following how you come on with methotrexate as I,ve just started it this week too. Been on Sulphasalazine for 4 x months & just seemed to be getting worse plus steroid injections were,nt working either. Terrible fatigue so went to GP for a blood test for lack of vitamin B12, thyroid problem and anemia but all come back OK. No further action required so I am blaming Sulphasalazine. Riding high on latest steroid injection at the minute but fingers crossed the Methotrexate will work for both of us.

[Agnes7 in reply to Sheenadon594]

Hi Sheenadon, I will keep you posted. I am also surviving on 2 steroid injections on my wrist. It has basically numbed the pain which is great, but my wrists still look swollen. Sulphursalazine just wasn’t good for me. Best of luck too.

[Geraldsecond]

I have been on 25mg for ten years now with no noticeable side effects, but I have met people who have had side effects and especially this one lady was taking it after breakfast and my rheumy told me to take it on an empty stomach. So it is very important to strictly follow the instructions.

[RAreyna]

I'm on 20mg, taking my folic acid as directed, and still having flares (currently on prednisone taper) and digestive problems. Have a feeling my rheum will have me on injections soon

[JFlay]

I was determined that I wouldn't get side effects when I started MTX, but I did ☹️ and after 20 weeks they were getting worse not better. I gave it a good try but it just doesn't suit some people.

[Mmrr in reply to JFlay]

Me too, MTX really worked for me joint and mobility wise. But the side effects were too great and I had to stop. I've not yet found anything that has worked as well as MTX.

[JFlay in reply to Mmrr]

Yes it had started to work for my joints too. We're you on the injections? I was on the tablets, I'm hoping I may be able to give the injections a try but will have to see what rheumy says when I go back on Wednesday.

[Mmrr in reply to JFlay]

Yes I went to the injections very quickly as the tablets and my gut didn't like each other! I was on MTX a year before giving up due to the gut issues.

[JFlay in reply to Mmrr]

My problem was gut issues too, it seems then that injections may not solve it 🙄

[Mmrr in reply to JFlay]

They do for some people, so maybe you will be one of them 🤞

[dembonesDAMNBONES in reply to Mmrr]

Could you elucidate on 'gut', please?

Are we talking nausea, pain, both or other issues?

[Pitbull2017]

Sorry to be a kill joy but asking others about side effects isn't a good idea, you've got to suck it and see, if you have preconceived ideas then any small problem will be blamed on the medication, and because it doesn't suit others it doesn't mean it won't suit you, my own personal opinion is that its the worst thing you can do to ask someone else about side effects, if you'er that concerned read the paper work that comes with the medication but to listen to other peoples experiences is pointless.

[dembonesDAMNBONES in reply to Pitbull2017]

I was on Ssz three times.

Nausea and gut pain each time.

Tried Emoprazole to deal with this and it worked for a while, but became less effective and caused other problems.

I'm considering MTX and see similar gut problems, so I'm covering my bets, thinking of alternatives to Emoprazole, but you raise a good point about folk not giving a drug a fair chance.