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I'm a newbie

Confirmed diagnosis 6 weeks ago for RA. A bit scary when I started reading about it but now I realize I am just have to live with the fact that my immune system likes my hands (and other parts) so much that it's decided to attack them. ;)

I have been taking Hydroxychloroquine for past 6 weeks and so far so good. Monday I will start taking Methotrexate ..... so a couple of silly questions ( it's how my brain is working at the moment)

Which is best, folic acid the day before or after?

Do I take all the Methotrexate at once or spread them out over the day?

Sorry if these questions are silly but that's all I can think of at the moment ... how to take meds. Forgot to ask rheumy nurse, when they say have you any questions my mind goes blank.

Thanks.

(are there any 'smilies on here?)

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Hello Purl. Welcome to the group. It was so long ago when I was on Methotrexate & Folic Acid, I’ve forgotten. It won’t be long before someone replies to you with an answer. Yes there are smiley faces. 🙂. Have a good day. Nic xx

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I am on methotrexate once a week and 2 folic acid each day to counteract the mouthsores side effect of methotrexate. I

Methotrexate helped the

swelling in my ankles. I was put on a gout medicine when I got my blood work last week. The jaw pain I was experiencing went away. I also got a cervical pillow that helped my neck and jaw pain. I used one for years but I left it at the hospital in June when I had breast cancer surgery, so something that small can make a difference. Good Luck!

Rexter

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I am posative and like your post, my RA likes my left foot, right hand, lungs, blood and stomach as a CT showed nodules the other week. Even with so many other AI diseases I am a half full girl (I wish at my age) not half empty. It is difficult at times but I do try to remember it must not stop me doing anything I want too. Life is a new normal and whilst I read people can't do marathons etc anymore and do feel sad for them, it may be that once controlled they can so why not ? Not everyone of course and I'm off to the gym as my lungs need excercise as do my knees. I may not be able to do this sometime in the future, but at the moment I can and their are sometimes other things I can't do like play the piano (or maybe thats a good thing) lol.

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Right on ML...my RA does not control me!!! At various points it has liked quite a few of my parts.....but thankfully not all at the same time.

If I am having a flare I do something I wouldn't do when I'm up and running. I don't try to be superwoman......that just ends up as a real disappointment because you can't do what you tried to do.

I pace myself, do what I can when I can & don't stress over what I can't do.

But it's the only way I can deal with it.

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Go for it girl! Just be careful. Do not overdo. Take water breaks.

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A litre of water well actually orange and pinapple Ribena and a large banana milkshake then a pot of tea and home now. lol Feeling like it is really worth it as its a programme for increasing lung capacity which really helps me. I think so lucky the nhs round here do this for people and its fun. It is supervised so fast walk for 30 minutes, weights, static bike and steps. Must burn the calories for chips tonight methinks. x

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Hi Purl....I'm 20 years diagnosed & still smiling....not much else you c an do really.Once you are on the right meds things will look up for you.

I took Mtx all at once at bedtime.....but you could split the dose on the same day.

I took the FA six days a week ......not MTX day ...so can't answer that one I'm afraid. Give your Rheumy nurse a call...she'll set you right.

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That rings a bell with me too. I took Methotrexate on Monday & Folic Acid on the other days. I was also on lots of other drugs too which had their own side effects.

That also reminded me of trying to explain to my Manager at work about how it was not only the Illness, diseases etc but also the medication that caused the problems. She said, ‘forget you’re ill at work and take your medication when you get home’! I was so gobsmacked!! xx

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Hope you have found a more caring manager? I'm sure if I'd had a manager like that I would have been out of a job PDQ. I would have had to tell her just what I thought of her Attitude!

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Haha! I did in a roundabout way because I got the backing of my union & occupational health then had to have back surgery. Then I had to take ill health retirement! xx

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Well done TD....sorry you needed surgery...but hope you left the old harridan in the lurch.

Hope you're enjoying your enforced retirement !

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I can't " like" your post ToD as you had to go through so much. I can only hope your battleaxe of a manager had a re-education programme from HR. Stupid woman

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I take all methotrexate bin Monday and folic acid Fri bdone this for 14 years. Blood test monthly. If that helps any

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Hi Purl and welcome to the site. I take methotrexate on a Monday, you take your folic acid every day except on Monday as it can stop the methotrexate from doing its job. I have found it works well for me, it has made my skin lovely I’m free of any dry skin. Don’t forget to have your regular two week blood tests, as it can damage your liver and kidneys. Mine have been ok. Hope this helps good luck I hope it helps you as much as it has me.

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Thanks for your replies. :)

I didn't even know what a flare was like, so had to ask rheumy nurse... apparently I had one before seeing the consultant after I started taking Naproxen, Doc said it could have been adverse reaction to it so stopped taking it after 1 day. Had blood test 2 days later and my CRP was 265l, had blood test last week and it was 12, so that was a flare apparently. The fewer of them I have the better as far as I'm concerned, hands, feet and knees were 4 times their normal size and the pain!

As long as I don't have to take MXT with food or after, bedtime seems a good idea as I can sleep through the bad bits if I get any. FA will take it day before if I remember, or day after if I forget.:)

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Meant to be 265 for CRP.

Is there a way of editing posts on here?

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Underneath your reply there are a thumbs up icon, Reply & More. Tap the More (it's a drop down box), select Edit, amend or add text & tap Edit response. Job done.

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Hi, you take the folic every day, except the day of taking mtx.

Make sure to drink lots of water, it really helps. Good luck! :)

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Hiya purl, welcome. Your questions aren't silly but they are easily answered from personal viewpoint. When I first started MTX tablets my Consultant suggested I spread my dose through the day with meals. I was on 15mg so took 2 with breakfast, 2 with lunch & 2 with my evening meal. Not only did I have no tummy side effects I found out that taking them this way meant more of the dose is retained than taking the dose all at once. Some people are told to take the full dose at night but I was advised against that, his reason was if I was ill during the night, he thought sleep was necessary (don't we all!) but particularly when you have a long term condition. When I need to be sick I wake up so it made sense.

I started on just 1 folic acid tablet the day after MTX day. I started to have some hair thinning so it was increased to 2 tablets, still the day after but the additional one I took the day before. Nowadays I take 6 a week, every day except the day I inject. There doesn't seem to be a right or wrong way just the better way for you. I've been diagnosed 10 years & taken MTX 9 years. My first DMARD was HCQ which worked well for nearly a year, that's when MTX was added.

Hope my experience helps. 😊

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More replies, thank you. :)

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Thank you for letting me know that I should not take folic acid the same day as methotrexate. My rheum did not tell me this. I am calling him now.

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If you are in the US it is common to take folic acid 7 days a week. They don't worry about taking it on MTX day.

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I am reading all your threads, your all very inspirational

I am not as brave as you lot, and still haven't got my head around having this condition

I can't get my head round that its not my tooth causing it, or some food or something else, I am bouncing around trying to find the answer in fixing it. but nothings working.

When I am not in a flare I think its gone or going but the flares are coming thick and fast.

I tried the S drug the side effects were awful, my stomach and how I felt also felt my breathing was getting hard, so stop it, after 6 days, and I am scared about the m, the h, and the l one

I am scared of going blind or losing my hair.

it might sound silly to anyone but I know I wont cope with losing my hair mentally

I had a fall 4 years ago and lost from front teeth

I struggle with that mentally

I wish I could be as brave as you guys.

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Veronica maybe you could give yourself a break here. Everyone responds differently when given news that they have such an illness. It is difficult to believe it is happening, so give yourself time. Meanwhile trust the Rheum Drs have experience when prescribing meds. Some side effects are warnings to discontinue meds, others settle in time, some become too troublesome. Just because some people have side effects doesn't mean you will. Finding the right drugs is concerning, but fighting against the diagnosis will cause more stress. Take care.

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You're going through probably the worst part of this nasty disease, Veronica, so you're bound to feel overwhelmed. I suspect most here have felt the same at times, including me, and the diagnosis didn't come as a massive shock in my case. Be kind and gentle with yourself, you deserve it. If you're really struggling with your diagnosis perhaps you would find it helpful to talk to someone? The NRAS helpline ( 0800 298 7650 Mon -Fri in office hours) is very useful or see your GP about access to talking therapies. It really does help. Huge virtual hugs

J

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Yep I can sympathise here, I know exactly how you feel, had a complete meltdown the other night because I couldn't get into or out of the bath on my own, I was just stuck standing in it ...my hubbie helped me to get in and out, but it didn't stop the tears from falling. I feel a real burden to him and feel completely useless at the moment at home and at work I feel that people don't understand and its as though I am putting it all on . I understand the not getting your head round it, there is so much to take in and decisions to make with meds, and the side effects sound awful. Its quite easy to put on a brave face, but here I feel you can say how you really feel and people understand and can offer advice, its a great help !

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Hi there I’ve recently joined the group and reading positive stories has really helped I was diagnosed last year and was on hydroxy 200mg alternating 400mg total a week is about 3200 a week. Due to a flare they have added on 10mg of methotrexate which I take Mondays then got to up it to 15mg 6 tablets next Monday. I take mine after dinner Monday evening then take 5mg of folic on a Friday I am also on 2 months of prednisone which I am in the process of weaning down and was only prescribed whilst the methotrexate kicks in. am having bloods every two weeks and the team have said they will call me if they are concerned with bloods. So far so good other that a few minor stomach problems which I can cope with. It’s a minefield and I try to take each day as it comes and don’t other think the side effects. Hope all goes well with the methotrexate and keep me updated😀 sue x. RA57

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You take it 24hrs after the tablets, you are probably best taking the tablets in one go. If you have a RA helpline give them a call or speak to your pharmacist who should be able to advise you. X

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Hi purl and welcome to the forum. As you've already had masses of advice already, I just wanted to say hello and to say there's no such thing as a silly question. When just starting out on the RA journey you need all the info you can get. From your name I assume you're into knitting too? Wishing you well

J

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I take all my mtx in one go before I go to bed on a Monday, and my folic acid 24 hours later. I only have to take one folic acid tablet, but others on here take six.

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Hi there, when you get your methotrexate there will be a leaflet in the box which will explain all about it and how to take it. I used to follow it to a 'T', though people have their own ways of taking theirs. Generally though, mtx tablets are taken all at once, on one day of the week, unless told otherwise by your rheumy. I was told to take folic acid no less than 24 hours before mtx - others have been told no less than 24 hrs after it! On Monday I am going back on mtx at a low dose alongside another med, and have been given double the daily dose of folic, and I have to take it the 6 days that I don't take mtx, as I suffered horrible side effects when on mtx before. Also, when I was on mtx previously, I had hydroxy added, and both together put me into remission - I hope for the same for you. Let us know how you get on, won't you? Good luck! :) x

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Hi purl

I’ve been OFF my MTX Meds for 6 weeks or so it Made my hair come out in Bunches

ON TAKING YOUR MEDICATION:

The RA Doctor told me choose a day to start taking MTX and keep that day as your usual day for taking it and you do take the dose you’ve been told to take in one go do not split them up, also and a lot more of us RA guys take Folic Acid one everyday except on the day you take MTX DO TAKE THE FOLIC ACID ON THIS DAY

Hope this helps and you feel better soon.

Regards

Shelly xx

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I suggest you read the book Natural Health Remedies A-Z by Janet Maccaro Phd before starting on the methotrexate track. It has sold out on Amazon but is available for download.

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Why what does it say?

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Update.

Phoned rheumy nurse advice line only to be told by a recorded message that no one is available until 4th September! Phoned Docs and was told no one available, not even for phone consultation until Tuesday! Asked pharmacist and she told me to take FA on same day as MXT .... I informed her that no, FA is taken the day before or after MXT and definitely not on the same day , so not very impressed with her.

So after all your lovely advice I have decided to take MXT in one dose on a Sunday evening with food and FA on Monday evening and keep taking Hydroxy at breakfast time every day. So hopefully I will sleep through any bad bits (if I succumb to them) and will be fighting fit for my birthday on Tuesday.

I will let you know if my plan works.

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Auto immune diseases are on the rise. The experts, scientist, doctors is blaming it on the food we eat. Pesticide infested, hormone contaminated. There are supplements out there that can help with the inflammation. Methotrexate is hard on the body, the liver. Awful side effects… Insomnia, headaches, more pain. Did a traumatic event trigger your RA? Did something traumatic happen to you in the last year or two? The arthur of the book I told you about said that if you’re pre-destined to have RA, a traumatic event triggered it. That was my case. I lost my son.

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purl, welcome..it takes a while but things will settle and you will know what you can do and can't do, the trick is not to do too much, pace yourself and let your medicines work.

I take folic acid 6 days a week, due to the mucositis and mouth ulcers, it does make a difference.

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Take Folic acid every day. Split dose of mtx in AM then later in the day (no more than 12 hrs apart). Or take them all at once (ONCE per week !! ). all depends on how your stomach reacts to it the next day or so. As it turns out, RA isnt my problem, but it may become so as i get older. Im 70 years young now and lots of people get dx with RA at my age. part of aging process for many.

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If you experience the nuisance MTX side effects (e.g. nausea, hair loss, gastric upset, the MTX 'blahs') with the oral tablets - then consider talking to your doctor about the subcutaneous weekly injection - this drug delivery route (plus DAILY 5mg Folic Acid) can minimize and/or prevent these side-effects. The daily 5g FA can also aid in preventing/minimizing the more serious side-effects. A recent paper confirmed that the FA can be taken on the same day as the MTX and is standard practice in N. America. Hope the link below works.

ncbi.nlm.nih.gov/pubmed/294...

The injection also provides a more reliable, direct and consistent drug dosage compared to the tablets, as the absorption from the GIT can vary between people. If you are not 'needle shy' then one can easily be taught to self administer the weekly injection - much like a diabetic and insulin.

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I wonder, as the authors are from Augusta University Medical Center does this not relate to 1mg folic acid prescribed in the US? That would make some sense of the dose being taken each day, unlike here in the UK where we're prescribed 5mg. Certainly the majority here are asked to not take in on MTX day.

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TL, DR the replies. Folic acid after your MTX. Ps welcome!

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I took folic acid every day apart from methotrexate day and took all methotrexate in one dose, im going to rheumy in a few weeks, anyone have an opinion on sulphasalasine, i don't want my hair to fall out again

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Hi Purl. I am probably repeating much of what the others have said but yes it is an overwhelming disease and do keep asking questions. That is very important.

I take my methotrexate on Mondays... all the pills at once and my Folic acid on Fridays. Not together. I have had the condition for 25 odd years and the acute stage lasted maybe five years. I am much more ambulant now and the methotrexate has been the best for me... my wonder drug.

I go to the gym and do gentle exercises.... wish i had done it long ago. I have a daily midday rest as i still tire easily. I have a "window ' of wellness each day and have learnt to live with it and accept it. I live in hope that the RA will burn out one day but its okay managing it now. I have not been able to work due to the tiredness and the pain. I no longer manage pain with strong meds but with Panadol and meditation. I can hardly believe i have achieved that... after all those years on Codeine.

I do some of my shopping (for clothes) on line. I have a list for my food shopping so i can do it quickly.

I love to write and i prop myself on my sofa with wireless key board and type away. Saves all that pain from sitting too long.

I sleep 10 hours a night..... always have had to since RA came knocking on my door.

My hands and feet, shoulders and elbows and knees are affected. My hands used to be bad now I its my knees. When i first got RA it liked my hands!! Couldn't hang out washing or vacuuming.... now i do these things slowly and gratefully. lol.

I have a little trick to keep myself going... when i have to tackle a few chores I reward myself with a few minutes of my favourite movie.... half an hour or more and then do a few more chores.

Depression was the hard part too.... I now take antidepressants which help a lot.

I hope this helps and i didnt ramble too much. Its a shock to be diagnosed with RA and everyone's experience is a little different. Pain makes one feel so miserable and sometimes irritable with others... have a plan when pain comes to be super kind to yourself and realise that your true self is your happy self.

All the best

Rosie

Geraldton Western Australia

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Lovely post Rosie! Clear, concise and warmhearted. Suzie x

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Thanks Suzie. Kind of you to comment Rosie x

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Welcome to a lovely community 😊

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I am sorry to have posted my misable day on your newbie post newbie

I am not so misable today, so saying a big hello xx

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Hi there I would ring your Rhuematoid help line before you take these pills there are correct doses and unless you do it right it’s not safe

I’m surprised that you haveant got instructions on your medication on how and when to take them,but please get the correct,info before you do

Hugs

Jean

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