Hi, hope someone can help.
Tonight is the day I take my 20mg MTX and without thinking I have just gone and taken folic acid tab!!
Should I take my MTX as normal or better leave it until tomorrow?
I haven't done this before but just didn't think what day it was as most days are pretty much the same these days.
I’ve done this in the past 🙄it’s not harmful my nurse said it’s just mtx stops the absorption of folic acid but don’t make a habit of it. I got myself a weekly dosage box I fill every Sunday for the week . Haven’t made a mistake since.😁
Haven’t actually done this but was told by a nurse it may prevent the Mtx from working to its best potential, but she did say the jury was out on this one. I think someone else will be along and answer you soon but could you phone a pharmacist at a chemist still open this evening? The pharmacist should be able to answer you. x
When I had my folic acid increased to one a day, the first thing I said to my consultant was not to take it in mtx day, he replied, it doesn't really matter. I did quiz a senior nurse specialist about it and she said she'd done extensive research into it and it doesn't make any difference if you do. When I was on one a day ( reduced now because I only take 10 mg of mtx now), I took it the same day and I was fine. I'm in remission by the way. xx
Hi Paula-C, interesting and so good you are in remission. Are you only taking MTX weekly or any other meds too to get into remission? What dose of MTX did you first start on before getting on to 10mg? Grateful for your reply please. Thanks
I'm also on enbrel, it was enbrel that took me into remission early 2013. I felt it start to work straight away and twelve weeks later was told I was in clinical remission. At the time I was injecting 17.5mg of mtx weekly. I've had mtx reduced over a period of time, my consultant knows it's enbrel that's keeping me in remission, not mtx. They like you to take mtx along side enbrel because it stops your body making antibodies against enbrel. I'm hoping when I see my consultant next he will reduce my mtx again.
Hi Paula-C, Is it possible to contact you by email?
Send me a private message. Click on my user name and there's a box top right to message me.
Sorry Paula-C, I should explain that it is my daughter who has RA for 10 years now and Enbrel has stopped working like it did and Rheumy has added MTX 10mg at moment and it has improved, but she still cannot do everything that she used to with Enbrel on its own. She is very tearful today and I do not know what to say at present?? She is now 28 years old and has a boyfriend and wants to settle and do the normal stuff, but feels very restricted. She is crying her eyes out at moment.
So sorry to read this, I've got two daughters and I'd be heartbroken to see one of mine suffering. Just wondering has she been switched to one of the cheaper biosimilar drugs? Personally I don't think 10mg is a high dose of mtx, my consultant told me years ago that the normal dose is 20mg, but I'm not a consultant and hopefully her consultant knows what he/she is doing. It can take several weeks to feel the benefit of mtx. I do know that these drugs can stop working after time, when this happens they normally put you on another one. Have you thought of phoning the Nras helpline for advice? You probably feel helpless at the moment. xx
Thank you so much, I am devastated and have been for 10 years. I agree that Rheumy will ask her to slowly increase MTX, but she hates MTX because she can't drink any alcohol with her friends, she can't walk in the sun in case it gives her a rash, she can't drink a fizzy drink, coffee, tea because of Caffeine (she does have the occasional cup of tea though). She generally cries that she cannot live a normal life being on MTX. Also having to go for blood checks monthly. As it is she also had an op in 2015 to remove two huge Dermoid cycst from inside her ovaries and now they have returned again, so therefore another op. Her eyes have some problems from taking Hydrox. in 2010. So really she is not happy. She has an app with Rheumy nurse in two weeks and she also has an app with her Rhemy consultant in December when she said she is going to ask to change to another Biologic, I do know that the Rheumy mentioned changing to Humiera (spelling wrong, I bet!) she was thinking of Simponi? She is scared to have Enbrel taken away because she has been told that they will not be able to get her on it again because of the costs. I am so exhausted with worry to see such unhappiness, but she is young and has a lot in front of her that she would like to do. Help!
Firstly I like to say that things will get better. I've been really bad with RA but at the moment I'm totally pain free and I don't take any pain relief at all. I think it might be a good idea for you to post y a new topic asking for advice and reasurance from others on here. I do also think that ringing the Nras helpline will help both of you. They have volunteers who have RA who phone people up to talk to them, perhaps a reassuring voice on the phone might help.
When you daughter has her appointment with the specialist nurse she should write down all the things she needs to ask, make it clear at the beginning of the appointment that she's got a list of questions that needs answering.
I asked if your daughter had switched to a biosimilar drug of enbrel, lots of people have been told it's exactly the same drug under a different name and I'm afraid they've been lied to. I was told I was going to be switched to a cheaper biosimilar drug, I did research into these new drugs and I refused. I typed up notes explaining why and these were handed to my consultant, the result was I didn't have to switch I could stay on enbrel, I'd read so many reports that the new biosimilar drugs didn't work so well when people had switched from the orginal, I just didn't want to take that risk, the savings isn't that much either.
Let's talk about mtx. I read somewhere that over 90% of people with RA have at sometime been on it, so if she's been googling about mtx and side effects she'll read lots of reports of people having side effects because loads more people have been on it. Apart from slight hair loss, which could be due to the menopause, I haven't had any side effects at all. I really don't know who's told your daughter about not to drink coffee, tea or fizzy drinks because of caffeine, that's news to me (I've been on mtx 10 year's). I must drink at least six cups of coffee a day, I have three in a morning, I don't like tea and I'm not a big fan of fizzy drinks, I do like Pepsi max though. Alcohol, well I'm not going to say it's okay to drink alcohol on mtx because everyone is different. People suggest to wait a bit and then have a few drinks and see how your bloods are. They do say to stick to the government guidelines, this is something she needs to discuss with her specialist nurse. All I can say is I drink, I love red and apart from once my bloods have always been well within the normal range. I like wine and I wasn't prepared to give it up! Yes, the sun and mtx can cause problems, I burn easily so I'm careful anyway, just put factor 50 on and away I go and haven't had any problems yet.
Blood tests...she'll probably have to have regular bloods done while they increase mtx, then she'll be on monthly ones. After about two years of being on it I was put on two monthly ones, then a few years later it was every three months.
I can't comment on Simponi because I don't know anyone that's on it, I have a friend on humira who's doing well and another friend who's on imraldi which is a biosimilar drug of humira and she's doing well too. Can't understand about not going back on enbrel because of the cost, as far as I know enbrel and humira cost around the same.
She's only young like you said and she's got so much living to do, a new boyfriend and she just wants to do what a normal girl of her age does. I'm a member of Nras and the magazine came a few days ago and read such an inspirational story about a young girl, I'm not ashamed to say it made me cry. At fourteen when she should of been out with friends etc, she was bed ridden, her mum having to lift her on and off the toilet, having to feed her. She started a new drug, got her health back, went to university to do nurse training (the nurses looking after her in hospital had inspired her to want to be a nurse), she graduated with a first class honours degree and she's going to start work soon as a school staff nurse. She met her husband during her darkest days, she's now got two small children. Her name is Hannah Roberts, haven't googled her but something may come up if you do. Just want to let you know that from very days with RA there is a bright light at the end of the tunnel.
I think I've covered everything I wanted to say. I know it's a bit of an essay but I really feel for you both. Like I said, I'm a mum and one of my daughters had a really bad health scare just under two years ago, I like you felt terribly helpless at the time, she's my youngest and I wanted to make it better and I couldn't. I took to the internet and Facebook groups and frightened myself to death. If you want to keep chatting that's okay. Send me a message and I'll give you my email address, that way it's more private. . I haven't got all the answers but I understand.
Take care
Paula xx
Dear Paula-C
Thank you so so much for the great reply. You have made me feel so much better and I will let my daughter know exactly what you have said. Just one thing I should mention to you that Nicole was changed to Benepali after 8 years of doing well on only Enbrel 50mg weekly. She did slide back into flares and they quickly put her back on Enbrel but it did not kick in the same, therefore she has now got to take MTX. 10mg weekly MTX is what she has been on since April this year and after 4 weeks had a result. The only problem is in the mornings she is very stiff and needs time to get going and then mostly ok, but every month before her period she has bad pain and when period is finished she's better again, but stiff in mornings! She was not like that with the 8 years she was on Enbrel, it is since the switch, not even her fault she just wanted to co-operate with her consultant regarding the costs! What a real shame, now she's back at square one. Good idea to write notes before seeing her consultant to have a good discussion with him and which Biologic to go on? But he did mention before lockdown occurred, Humira, so will see what happens. In the meantime I suspect she will gradually need to increase MTX 12.5 and then 15mg to see if she gets a better result. But to tell you the truth I can feel that she is thinking of having a child in the next few years and try to come off of meds for a short time to do so, to plan it well really. Advice from you is so great really. I really want to give you my email address now because your experience is priceless. Have already been in touch with NRAS, great help they are, they did advise me to get on to HealthUnlocked for the experienced, and I must admit it has been a godsend!
Just a quick reply, will message more later. She could ask for a short course of oral steroids or a steroid injection while she's waiting to get established on mtx. xx
Noted thanks very much
Just sent you my email address in a private message, just click on the notification on the top left next to the bell. Let me know if you email me, I'll look out for it. x
Hi I'm Paula's friend, I've had RA over 20 years since I was 28,now 51. I've been on mtx since day one, originally with sulphasalazine and plaquenil then 6 years ago I changed to Humira and mtx. I was on 20mg now reduced to 15mg. I'm classed as non errosive now as I've had no new damage since starting Humira. I've no side effects whatsoever and I take no pain relief at all. I go on holiday to places like Morocco, Tunisia and Italy, I use good suncream always. Alcohol rules were relaxed with mtx as long as you stick to the recommended units and bloods are ok. It's in the purple mtx advice booklet. I was asked to change to Imraldi and I refused and was left on my Humira. I work full-time and active. I've even climbed to the top of the Vatican dome and Tower of Pisa. I brought my daughters up on my own too. My Rheumy's first words were sorry it's RA but it's my job to get you back to normal. He did too. I've never stopped my coffee either. I've been in remission most of the time I've been on meds too except that blip 6 years ago. Sorry about the essay. Here if you need anything x
Thank you so so much Nyreedw, so kind of you to explain your experience and so so kind of Paul C too and to ask you to contact me. Thank you both from the bottom of my heart, really. xx
apologies for spelling mistake to Paula-C xx
I was told it stops the full effect of MXT. I think I’d possibly try and call a pharmacy or perhaps gp out of hours service/111 to ask.
I did the same thing - took my folic acid in the evening when I'd done my methotrexate injection that morning. Too late to do anything about it so I just forgot about it; I'm sure that I've read on here that some people (maybe in America?) take it every day anyway.
It's not advised you do as you know otherwise why would you need to ask?! That said one week won't harm, it would be more trouble to get back to your normal MTX day if you take it tomorrow, moving it a day forward until you get back to Monday again. What I would recommend is taking your folic acid at night & your MTX in morning, or vice versa, that leaves long enough for it to matter less. As others have said it just reduces the efficacy of your MTX slightly if you take the two together or close together. Or, what may help, especially if you have other meds, is to buy a dosette box, I did this when I had to reduce a med to every other day, saved a whole load of "did I take it last night"s!
Thanks to everyone who answered . I'm thinking I'll leave MTX until tomorrow now just to be on the safe side and be more careful in the future. 🤦♀️
Don’t forget to change your mtx day next week too😊
In the States they often take folic acid 7/7, so that suggests it really isn’t that critical.
Don't they usually only take 1mg or 2mg though? I don't recall anyone from the US here taking 5mg.
Yes, but it still showing that it is possible to take the two together without harm. After all it is just vitamin B, which is in lots of things like vitamin supplements and kale smoothies so not an uncommon substance! And if you are taking MTX by tablet there are loads of things that can reduce its absorption, like a dodgy stomach, so one week with lower effectiveness is really not a big deal.
Yes, I’m in the US and my rheumy has me taking it daily since I started MTX. It was 1mg daily for the first 6 months, then new doc increased it to 2mg daily this past January because I still had the occasional headache on the days after taking MTX. She said they even go higher with daily folic acid sometimes.
I'm in the US but I take folic acid every day. I think its a smaller amount than you are prescribed in the UK. I doubt that it would have any affect on you.
I have been told by RA Consultant to take my 5mg of folic acid two days before my 25mg of methotrexate. I have just started to use the NHS App Healthera which I have found very useful to remind me daily to take what and when, I can also reorder medication too with my pharmacy. Check it out really useful.
Oops ! I did the same yesterday. I take folic acid in the morning and Mtx at night. I still took my Mtx last night. I don’t want to change the day. so feel it won’t hurt this once. I’m on Humira, so don’t feel it such a worry anyway. X
Hi everyone,
Thanks so much for all your answers.
I phoned the local pharmacist this morning and explained what I'd done.
She said not to worry about it and to take my MTX as soon as possible today and then as normal next Monday. She said that if it happened again it was ok to take the MTX as all that would happen is that the folic acid dose would be rendered useless by the MTX.
One thing I did find, after deciding to take the MTX this morning about 11am (whereas I usually take it around 7pm), was that I felt quite nauseous and drained for a few hours afterwards. I remember feeling like that for several weeks when I first started it last July and after each dose increase but not for some time. I do 'hit a brick wall' sometimes within a day or two of taking MTX but haven't had that nauseating yuk feeling for ages.
Anyway, thanks again.🤗
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Reply on Folic Acid...
What is the reason for not taking folic acid on MTX day?
