Starting methotrexate for RA...any advice

[Zach1971]

Hi just about to start methotrexate and am going onto 25mg weekly straight away...that seems higher than others on the forum. Should I be concerned, am 52 and was diagnosed about 3 years ago. Also they recommend folic acid to be taken day after? Have others tried this. Any success stories out there would be appreciated

[helixhelix]

poeple tend not to post if all is well! I’ve been taking it for 13 years now - with no problems. I wouldn’t be without it!

Take your folic acid, it helps also with side affects. If i forget i get a headache.

And drink lots of water.

For me I’ve worked out that it’s better just to eat a light meal before hand. But you’ll work out what suits you.

[Zach1971 in reply to helixhelix]

Thank you

[Sheila_G]

I would say do as you are advised by your rheumatologist. They are the only people who understand this disease and will keep a very close eye on you at first. I would have thought they would have started you on a lower dose but each case is different. Please continue to post and if you have any concerns at all contact yor rheumatology team. Good luck.

[Zach1971 in reply to Sheila_G]

Thanks, I called them after these posts and it was a typo...starting on 15mg...so that's good to know

[Sheila_G in reply to Zach1971]

That's good. I have been on mxt for 21 years without any problems. All the best.

[Runrig01]

Most people usually taper up to the 25mg, to monitor its impact on the liver, as well as assessing how well you tolerate it. I’ve been on 25mg for years with no bad effects, and keeps my peripheral symptoms manageable. I take folic acid every day, except methotrexate day. I prefer to take it in the evening, then I sleep through the fatigue mainly. Wouldn’t be without it.

[Zach1971 in reply to Runrig01]

Thanks for advice.

[Triscichick]

I did not have success with it. You take all of the pills on one day, and then you take folic acid, because the drug mimics folic acid.

[helixhelix in reply to Triscichick]

just to add detail, the drug doesn’t mimic folic acid but tends to reduce levels of folate in your body, so have to replace this using folic acid.

[Zach1971 in reply to Triscichick]

Thanks, all I can do is try I think

[Biker52]

Everyone is different as has been mentioned before.

I started on 15mg and am now on 20mg and am on Week 23.

I have the muzzy head the morning after taking it but nothing unbearable but I take folic acid six days a week which I know helps.

Fingers crossed…which I couldn’t do before methotrexate but can now…it continues working for me as it has for so many others and it works for you!

[Zach1971 in reply to Biker52]

Good to hear and thanks

[JEM95]

I’ve been taking it for nearly 10 years. I did have side effects to start with and following each increase but they do settle in time.

You don’t get instant results usually, it can take up to 3 months to feel any benefit.

I also take folic acid (or frolic acid as I call it) six days a week. Injections are better than tablet (in my experience) and taking before bed is best too.

Don’t be scare-mongered, it is a great drug for many, so give it a good go.

[Zach1971 in reply to JEM95]

Will do and thanks for your post

[Dobcross1]

Hi, I've been on 25mg MTX for over 3 years now and wouldn't be without it. I'm on the injection rather than the pills. I take Folic Acid every day except the day I take MTX. I do suffer with fatigue but honestly MTX allows me to live an (almost) normal life and believe me I was in a right state when diagnosed! Good luck!

[Zach1971 in reply to Dobcross1]

Good to know, because not being able to do basic things like open a can was driving me mad...

[AgedCrone]

I was diagnosed at about your age 20+ years ago & I’m still going strong.

Take your Mtx with the idea that it will be the right drug for you. It isn’t one of the most prescribed Dmards for nothing…most people who take it do very well on it. I had 7 very good years …..taking it after dinner….kidding myself if I did have any problems..I’d sleep through them…& that worked for me.

Don’t look for problems …. dwelling on the posts saying what a rotten time some people have on it only causes unnecessary anxiety.

Just one thought…..if you do think it is making you nauseous or gives you a headache…ask your rheumy nurse if you can up the FA…I think most people find “FA every day except Mtx day” works best.

Good luck..hope it really suits you.

[Zach1971 in reply to AgedCrone]

Yep me too 👍

[Gilliancheche]

I am on a lower dosage but was advised to take early evening after a meal. They said was less harsh on the stomach that way and so gave me the rest of evening and night to get over fatigue. The few occasions I have not done this I have experienced a severe headache and more fatigue. I also take folic acid 6 days a week. Every day except the MTX day to combat nausea. Good luck

[Coralfluxx in reply to Gilliancheche]

me too. I am on 15mg and had a horrible time at the start and it did not kick in for 4 months. I have tried taking it every which way and find it best to eat a good supper on MTX day and then take it an hour before bedtime. This gives me least reaction apart from waking with a hot flush in the night.

[Zach1971 in reply to Gilliancheche]

The folic everyday apart from MTX seems to be the favourite approach

[nanny_bee71]

I had been on 25 mgs since starting 4 years ago with folic acid the day after. Reently been reduced by GP to 20 mgs after a couple of dodgy blood test results - but rheumatologist has now increased it back to 25 mgs. No side effects but not a lot of difference in slowing the advance of RA.

[Zach1971 in reply to nanny_bee71]

Good to think that they monitor you throughout. Thanks

[ks1966]

Best of luck. If you feel nauseous I suggest you take a folic acid pill a day before and a day after you take you Mtx.

[Zach1971 in reply to ks1966]

👍good advice

[BoneyC]

It sounds quite normal but ask your rheumatologist if you are unsure.

I was dx. as a child in 1971 and was one of the first to be put on MTX for the treatment of RA, that was when I was about 16-18 (so long ago I can't remember exactly) and I still take it (by injection). Potentially that's 43 years of MTX.

Only stopped it 3 times - twice before normal pregnancies and once when neutrophils dropped (neutropenia).

Hopefully you will be just as successful, best of luck.

[Zach1971 in reply to BoneyC]

That's amazing. Good to know it can be tolerated for so long

[BoneyC in reply to Zach1971]

Yes, I'm still very much alive & kicking!

Anyone recently diagnosed will have a whole array of new drugs to try, far more than was available to anyone dx. in the 1970's, or earlier, so at least you have that on your side.

[Gottarelax]

My rheumatologist started me on a 2 weekly increasing dose (15, 20, 25) to build up tolerance/ensure no major side effects. He also gave me 5 mg folic acid to take every day other than the MTX day. I have tolerated it well but gone on to the injectable as the oral dose wasn't enough.

[Zach1971 in reply to Gottarelax]

Yes looks like I'm actually starting on 15mg now. Thanks

[LondonLinda]

Hi Zach, like many others, I too am on Methotrexate 25mg but only take once a week and was told to take my folic acid two days prior to protect the liver. I’m also on Rituximab infusions having failed on so many other biologicals but the methotrexate routine has never changed. Good luck