Taking Mtx

Well, I'd got myself into a proper tweak over taking mtx. Reading everything I could find, asking others' opinions and having a fair few sleepless nights. Now, I know we are all different and react very differently to the drugs we are given but I took the first dose on Thursday. I took it with my evening meal, drank lashings of water and ginger beer and - nothing. A little queasiness perhaps but nothing significant. I know it's only the first dose, that I could be lucky, that things may change in time but, whooppee, am I relieved!

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  • Hey, well done! Long may it last. I've never felt bad after taking Mtx, sometimes I think I'm tired the next day because of it but on balance I don't think so, just as often I am full of beans the next day. It's good to keep up the water intake, regular good though not excessive amounts, not just on Mtx day but always, helps flush it out of your system ready for the next dose.

  • Thank you. Proper cowardly custard I was

  • If I was tired at all I reckon it was having 2 of the grandkids over to play and for tea. M shattered now

  • Your are taking Folic Acid aren't you?

    Jacqui

  • I have been since before mtx actually. It's in my multivitamins

  • The recommended folic acid dose is 5 mg. You may have it increased if you do have side effects.

    Jacqui

  • Thank you very much. I have Aldi's best all lined up and ready to go - along with some yummy preserved ginger and travel sickness pills

  • As Jaqui says you need 5mg Folic Acid 6 days a week. You cannot buy that strength over the counter - you need a prescription.

    When I started Mtx I worked out to get 5mg from OTC pills you'd need to take about 20(or more) a day.

    You don't want to spoil the good experience of Mtx by feeling sick.

    Ask your Rheumy team why they haven't given you a prescription......also if you take a multi Vit that contains FA you'd better tell Rheumy..don't want you overdosing!

    Glad the first dose went well.

    AC

  • Yes, they have given me the folic acid too. All drugged up and ready to go

  • You will be fine & in a few weeks time you'll be like everyone who is successful on Mtx & wonder why on earth you worried about I!

    If not .....sorry about that...you'll have to try something else. But as I'm sure you know, like all of us, we have no bloomin' control over these wretched drugs.We are all rooting for you buttons!

  • No control. That sounds horribly familiar. Lol

  • I didn't mean no control over whether we take the drugs, but over how we react to them. We can only rely on the experience of the medic who prescribes them to decide Mtx for you, but Lfl for me!

    I'm awaiting my second pair of RTX infusions....so far all is well, but when I read Dr Google I bury my head in the sand and sing La,La,La,!

  • Same here I haven't felt any ill effects being on it and thats me been on it since 2014

  • Thank you. Always happy to hear good news

  • Really good news, definitely helped me to take it at night. A few symptoms to begin with, for a few days of the first few weeks. 11 weeks in it started to work. Fingers crossed for you. X

  • Thank you very much.

  • Seems like you worried for nothing! Thanks for posting this, It helps others who are holding off taking it when they read from others who are also bothered about taking their first dose. It's odd, taking it didn't bother me one bit but reading here many Rheumy's don't take time to talk to their patients about it like mine did when he first prescribed it for me, it can allay concern if you can ask the person who' subset placed to answer. It was also my second DMARD though so that probably had some bearing on how I felt about it, I just wanted to get back to feeling better, the way I felt when I first started my meds.

    I took my initial 15mg as he suggested, 2 with meals & I'm sure that helped me because I had few side effects from the start. I was prescribed one folic acid to take the day after I took my MTX to begin with but the longer I took it I started getting some nausea so he increased it to the day before as well. When I needed an increase in dose I started with nausea again, that's when I changed to injections. I've been on it 8 years now & it's been my best med, certainly the longest serving!

    Your Rheumy should have also prescribed you 5mg tablets of folic acid to take. MTX is a folate antagonist, it can deplete the little folate we store & that can lead to the side effects you'll have read about, the more common ones, nausea, hair loss & mouth ulcers. This is why we need to supplement with folic acid at doses greater than those in a multi vitamin so please if you've not been prescribed 5mg folic acid do ask if your GP will do a prescription for you. He/she should have received a report which will advise him/her your med regime, it should also say how often you've to take it. There's no written recommendation, each Rheumy has their preference, mine prefers her patients to take 6 a week. It can vary from one tablet a week to 6, the only stipulation is not on the day you take your MTX, this is because it's thought taking folic acid on the same day can reduce the effacacy of the MTX.

    I hope it works as well for you as it has for me & side effects, if you have any, aren't bothersome, but if they are you know an increase in folic acid should help ease them.

  • That's so kind of you. One of the reasons I posted was to share good news. Having done so much reading on mtx and possible side effects I had frightened myself and don't think I'm alone in that. RA is a scarey disease isn't it?

  • It doesn't have to be scary. Nowadays there are many meds our Rheumy's can prescribe, one has to work....that's the idea anyway, few are unfortunate enough to not respond well to one or another. Those with RD in my Nan's generation, born in the late 19th century were mostly the ones who just missed out on what medical science has given us. She had terribly disfigured feet & hands, survived on brufen & some smelly ointment. Could still knit like a demon though!

  • Bless her. I hope the "knitting like a demon" will be me too

  • Fingers crossed for you. Recently out shopping I was admiring a a lady's blanket, the type which are made up of lots of colourful knitted squares if you understand. She was in a wheelchair & had it covering her lap & legs & I said how much I liked it, that it looked lovely & warm & that it reminded me of the blankets & shawls that my Nan used to make. I asked her if she'd made it & her husband replied before she could saying it was him that makes them as she has rheumatoid arthritis & feels the cold sitting in her chair. I told her I had it too & her face lit up, I guess she doesn't come across many other people with it & said how the cold must affect her joints terribly. I said to her husband I shouldn't have presumed that it was her that did knitting & that it was beautiful! He asked if I lived locally & said I did. He then surprised me saying if I'd like he'd bring one round to my house for me if I liked, he had plenty because he also donates them to the local dogs & cats rescue centres. How nice was that? I kindly refused of course saying he could donate the one he would have given me to the doggies.

  • I suppose there aren't many of us so happy to talk about having RA. I suspect you made her day just by talking to her. The majority of us tend to ignore wheelchair users which is so wrong. They sound a lovely couple.

  • I learned a long while ago not to ignore wheelchair users. I was torn off a strip by a friend who's my age & has SB by asking her mum how things were! I didn't do it again.

    They were a lovely couple, proper old school Gran & Grandad.

  • If your not on something to line your stomach I'd ask for something it'll help with the MTX good luck 🌹Dawn

  • That great, the only really bad side effect I had was really bad moods! At one point I attacked my oh with a chair, he was bruised from the chest down. Hated myself as this was completely out of character, spoke to rheumy nurse she agreed That mood swings were a side effect, the dose was lowered & had injections instead,although I was easily irritated,nothing as bad as that happened again! Am now off all meds as in remission after having flu/ chest infection, (I was going to have humira as I was flaring so badly before Xmas)I'm now symptom free for the first tim in 13 years!

  • Mood swings! Good grief aren't I irritable enough.

  • Lol, though really not funny at the time, the other odd thing about this is IBS has stopped too, only just realised when you wrote about mood swings!😁👍👍

  • I have been on mtx for 8 months now and it never bothered me. I always have a bowl of cereal before I take my 8 pills every Sunday, I take folic acid everyday as prescribed by my rheumy over here in the states. Good luck and I hope it works for you cause it has been around for about 50 years and is inexspensive.

  • Thank you for such a lovely positive response

  • Every one is different. The MTX worked great for me for over a years then my liver had had enough and had to stop.

  • I'm sorry it didn't work out for you. Aren't we lucky there are so many other drugs to try?

  • Everyone Is different. That's why one med doesn't fit all and it's a case of trial and error. I think 5mg is the normal dose of folic acid but in the USA they like to give 1mg per day. If you get lots of side effects they up your dose to 5mg a day but it's considered overkill unless you are very ill.

    My friend was on methotrexate for ulcerative colitis. She had no issues at all. I took one dose and it hospitalized me. They are now rechallenging me on subcut methotrexate and I've been violently sick for two days. My GP knows several patients on subcut and they have no side effects at all. All guess work really. Fingers crossed it works for you but yes check you should be getting folic acid I'm very surprised you weren't prescribed it. Over the counter is not a high enough dose. Having said that my rheumy nurse has a a lady who takes methotrexate with no side effects and does not take folic acid either

  • Thank you. Such a kind response. I hope you find the drug that helps you very soon. Big hugs

  • May I ask how long you've had RA and what dose of mtx you are on ? I'm on 0.8 ml SC and only on a 2 mg tablet of Folic Acid daily. Going on my 3rd injection so far.

  • Hi Nordic1

    I was only diagnosed last November and my one and only dose of methotrexate was 15mg. But this is going up to 20mg after the next two doses. This is all very new to me. How long have you had RA?

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