So, they have replied via email and said that I should NOT take Folic Acid on Saturday (day after taking Methotrexate) of Friday (day I take MTX).
I'm really shocked and I'm terrified of side-effects again. I do have strong migraine pills and took 1 on Sat but it did nothing! I can't stay all day in bed on a Saturday. I have things to do. It's ridiculous.
So things are staying as they were. Folic Acid 5 times a week but not the day after Methotrexate, which I found was really helping me with the side-effects. I don't see how some people are okay to take it the day after and I'm not?! x
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regina79
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I am not taking Folic Acid on the day of Methotrexate... never have. But I thought it was okay to take it the day AFTER taking MTX. But apparently i'm now no longer allowed to do so...
I wonder why? Did you ask? As you know I & many others here are 'allowed' to, those of us taking it every day except MTX day. I would have thought if you'd made it clear the bad heads it's causing they'd have relented. Did you say they're bad enough to confine you to bed leaving you just the one day of the weekend?
Was the reply from a nurse? If it was then I'd definitely talk to your Rheumy about it, face to face is often a better way of getting your point over so I hope your appointment isn't long off. I'm sorry, you sound so frustrated with the response, hardly surprising.
I have no idea?! Given that my private Rheumatologist told me to initially take Folic Acid once a week on the day after Methotrexate! It makes no sense to me.
I did stress reg. the headaches and the reply was to talk to my GP about headache tablets!! I already take the strongest migraine pills if I get one. And I did take it on the day I got it very bad on Saturday.
I have replied that I have things to do on a Saturday and I can't stay in bed all day for a tablet side-effects. It's stupid when there is actually Folic Acid to help with that.
Well you've made them aware but I don't think their solution is an option. I wonder if injections would be a compromise if they won't budge on allowing you to take it the day after. I don't know for sure if it would stop the headaches caused by tablets but it's worth the ask?
It depends on how you respond. I do, my Rheumy prefers to, it cuts back the bleurrgh feeling the days after. I suppose you'd play it by ear, see if you need them but I think most take some.
My email was to the attention of the Specialist Rheumatologist, so i'm assuming he replied or they checked with him and replied. They just said that they 'confirmed' that this is how it should be taken.
This is just my own opinion, I think try experimenting and take it for 5 days (except on MTX day) on days that suit you! As far as I know there needs to be at least a 12 hour gap for taking folic acid after MTX but I'm sure other members can clarify. When I was on MTX I took it on Monday's and folic acid Tues- Sat, no one told me otherwise.
I totally agree, do what works for you. No one can give you medical advice, but clearly many rheumatologists prescribe folic acid the day after mtx. You should talk to your rheum about this, but also be guided by your own experience. Folic acid prescribing is extremely variable, but clearly many people take it the day after mtx with absolutely no problems,a nd no contraindications. If it makes you feel better, take it.
As far as I know the only day oh don’t take folic acid is on the day out take your methotrexate. I would suggest asking to see the rheumatologist or the nurse specialist xx
From what I gathered above you used to take folic acid the day after your MTX, and it made the day after bearable / liveable, but now for some reason you're being advised otherwise.
We've had regular discussions here as to how and when we take folic acid and it differs quite a bit. When I moved from one rheumy to a second, the first had said once a week but the second said 6 days a week. When I asked why they differed the second said that it helped with the side effects and if I ended up with too much my body would just pee it out. So even though they're both consultants, their views differed.
Personally, if I found it had been making my life bearable then I think I would keep taking it unless it was explained to me exactly why I shouldn't. If you're losing one day a week confined to bed because you're not taking the folic acid, then I wonder what's the worst thing to happen if you do take it and regain that day in your life?
Maybe I'd be foolish to do it, but I'd feel that it's my life and I'd be the one in bed all day miserable. I wouldn't change until I'd had a meeting with the rheumy and had it explained what the worst could happen was - cause it seems to me the worst already is happening
Hi Regina, lots of relevant info here. It does seem to vary very much according to how high is your MTX dose. Yours is as mine was and I was taking folic acid every day except MTX day, and was on Hydroxychloroquine too.
The only headaches I got were a side effect of MTX, coming on with activity. Not migraine. But bad, and accompanied by dreadful fatigue; the only solution was rest or it got worse and worse.
This was no different with injections, for me. We all react differently though.
It does seem very strange that your prescription of folic acid precludes taking it when you obviously need it so much.
Have you tried natural supplementation of folate instead? Totally harmless and you could have it every day.... this type linked is better absorbed than folic acid too: amazon.co.uk/L-Methylfolate...
I take 5mg folic acid every day except the day I take Methotrexate. I used to take it once a week but it was increased to mitigate the side effects of the MTX.
Well this all has me perplexed. I take 5 x MTX on a Friday and 1 x 5mg folic acid on Sunday. When i first got my MTX and folic acid from the hospital appointment, they were both yellow pills in brown bottles and on the second week i took 5 folic acid by mistake. I rung in a panic and was told that extra folic wouldn't harm me as many have said.
I count myself VERY lucky that i have no side effects from either of the pills, my heart goes out to all of you that do.
I have my annual check up next week - so i'll see if there is any change
I have been on methotrexate injections and tablets prior to the injections and have always been told not to take my folic acid on same day as you inject x
I am on the highest dose of MTX for RA (25mg) and take 5 mg folic acid once a week, 3 days after the MTX. As I understand it, the longer the gap between the MTX and the folic acid, the longer the MTX gets to work, but the consultant has to balance that against how well you tolerate side-effects. The folic acid tones down the action of the MTX, so taking it too soon means you do not get the full benefit of the MTX. Also, consultants are independent of each other and have their own preferred ways of prescribing! All very complicated, I'm afraid.
If they didn’t - try to get an appointment or at least a telephone appointment and ask them to explain exactly why..... because to be perfectly honest I would say 99% of people on here do take FA the day after they’ve taken methotrexate.
Unless there is a problem with your blood tests indicating you shouldn’t be taking the extra FA for some reason....which would be fair enough...but do ask for an explanation.
Especially as you say it seemed to be helping your migraines, it doesn’t seem unreasonable to expect a full explanation.
I think we all live & learn.....That if we don’t understand what our prescribed medication is supposed to achieve.....we must ask questions until we get an answer.
No idea. And I can’t see my specialist nurse until mid November apparently.. they haven’t replied about giving me a helpline number!!!
It’s odd. What if I have side effects which I am altre experiencing?
I find this very weird.
He might want to see if Methotrexate will work better without taking Folic Acid the same way and after. He probably thinks that I’ll be covered for those 2 days by taking it all other days...
well see how I go this Saturday but next Saturday I have my 40s birthday party and I really want to be well!! Xxx
You don’t need to “confront “the pharmacist...just calmly ask him his professional opinion...he may know some situations where this happens. If he is adamant he knows no reason why you shouldn’t take it the day after Mtx .....go back to your medical practice and ask more questions.
Have you spoken to your GP ?
If you get really bad migraines and you are 99% certain the folic acid stops or at least relieves them .....keep at it.
I’d keep niggling away. If they give you a reasonable explanation you’ll have to live with it but not until you’ve explored every avenue .
The trouble with medication is that it’s not an exact science and opinions vary. I know the current consensus is no folic acid on MTX day but I’ve never heard you can’t take folic acid an entire day later. Due to side effects, I’ve always taken it 6 days a week.
Oh yes, absolutely. I wasn’t giving medical advice. Nobody should ever change medication or go against the person who has seen them in person and knows their medical history. I think the problem is that we - as society - often expect medicine to be black and white, when it’s actually many shades of grey.
Plus I think on the whole we British are far too polite....we just say “thank you Doctor” and walk away. I know in the US my friends are much more upfront with their doctors than we are!
I guess we might question more if when we keep changing meds it costs £££££?
Hi Regina, you might be interested to know that in the USA folic acid is taken every single day even methotrexate day. So I wouldn't worry to much about taking an extra dose on your birthday, it won't endanger your life, if you feel this will help you enjoy your celebration. Then next time you see your rheumy ask them about their reasoning. Also keep a diary of side effects to show them how it effects you without taking on the day after the medication.
It's amazing how the guidelines are different. I think I must agree with you. For that week I will take it the day after Methotrexate and won't take it on a different day instead... it's not the end of the World. And it's only for a week.
I will do. But also if I'm still sick the same way by the time I see him, I will tell him that I can't carry on the same way. x
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So things are staying as they were. Folic Acid 5 times a week but not the day after Methotrexate, which I found was really helping me with the side-effects. I don't see how some people are okay to take it the day after and I'm not?! x
I already take the strongest migraine pills if I get one. And I did take it on the day I got it very bad on Saturday. 
i'm going to the pharmacy tomorrow so I can indeed ask. I'll let you know! x
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