Folic Acid

[JayneN]

Can anyone help please ? I've been taking Mx injections for 7 weeks and Still in horrendous pain (I know it's still early days ) but I only take 1 folic acid a week . Reading posts were people are taking more so just wanted to ask what is your opinion ? Thankyou

[helixhelix]

Sadly the folic acid does nothing for speeding up the positive effects of MTX, so taking more isn't likely to have any effect on your pain level. We take it just to restore our levels as the MTX is a folate antagonist so knocks out your natural levels.

When I was first diagnosed my rheumy explained to me that she liked to start people on just one tablet a week as she preferred people to take the least possible amount. She only increased it if and when side effects like mouth ulcers appeared. After seven years I am now on 3 a week as recently my MCV values were rising slightly.

[JayneN in reply to helixhelix]

Wow that's why I'm having mouth ulcers ! I thought my colitis has flared with no other side effects .. also I've noticed my eyes feel very dry ? Is that another effect do u know ? Tbh I hate taking medication of any kind but don't really have a choice with the arthritis. I hate taking mx as so many side effects and so many things you can't do . The drinking doesn't bother me but not been able to go in the sun does .... sorry for the moaning I'm normally a very positive person but find this has completely taken over me .

[helixhelix in reply to JayneN]

Did your doctor or nurse not tell you to flag it up if you got mouth ulcers? Poor treatment! More folic acid could well sort them v quickly. either that or swapping to injecting MTX.

Dry eyes is most likely the disease, with RA you get a bit dry and are also more likely to have secondary Sjorgen's which can range from minor annoyance to downright dreadful. Eye drops (without preservative) can help hugely.

Yes it's a shock to have to take drugs, but to my mind the disease is way more scary than the drugs. And now MTX doesn't stop me doing anything. Yes I have to use sunscreen, but I'm outdoors all summer. Amd these days I can drink moderately with no problem.

Seven weeks is still hugely early - be nice to yourself this takes a while to come to terms with, but you'll get there.

[JayneN in reply to helixhelix]

Thankyou so much for your great advice . It's put my mind at rest a lot more . I am on the injections as had bad reaction to the tablets . Think it's a mindset also so onward and upwards ..... thankyou

[AgedCrone in reply to helixhelix]

We really do all react very differently to Mtx...I took Mtx very successfully for seven years ....took 6 FA per week & rheumy said a glass of wine a day was fine. I wasn't on any other meds.

At first I took it easy in the sun.....despite never having had any bad reaction .....but it had no adverse effects & I found I could use factor 30 sun protection & have no problems at all.

I so agree...RD's are far scarier than taking a pill.....you always have the choice to stop taking a pill......to my knowledge you can't just switch off the RD's!

[5halifax in reply to helixhelix]

Helixhelix. I just want to say thank you for your thoughtful and credible posts. I’ve learned so much from your responses to other’s concerns - you always offer common sense advice based on scientific evidence and in such compassionate way. I feel very lucky to benefit from your wisdom.

[JayneN in reply to 5halifax]

Yes I totally agree

[helixhelix in reply to 5halifax]

Thanks...

[Hidden]

I switched to injections as like you had mouth ulcers, sickness et etc. they started me on one 5mg folic acid day before and two days after mtx, but due to continuing nausea can take 6 days a week if i want. I just thought folic combated nausea? My team say 2 units of alcohol a day limit fine but i never drink on mtx day or anything else. I m on hydroxychloroquine too. Not medical advice, i do drink loads of water on mtx day too, sorry you're feeling crappy, not a club anyone wants to belong to 😀

[JayneN in reply to Hidden]

Thankyou Karena it's an awful thing to have but we have to get on with it . I have colitis for 18 yrs and have gone through some horrendous times and been in remission for 2 years so finally thought my life's getting better then this .... it's a complete 360 degree turn around for anyone but it's good to have the support and know your not going through it yourself .... thankyou 🌹

[Pamelah5]

Maybe you could ask for a steroid injection until the meds kick in. I was given a quite a few over the months as my levels were very high. I take one Folic acid 6 days a week never the same day as Methotrexate.

I wish you well

Best wishes

Pamela xx

[JayneN in reply to Pamelah5]

Hi Pamela due to having steroids for the last 18 years with having colitis I'm unable to Have prednisilone . I've had 4 injections under ultrasounds directly into my wrist and 5 injections into my bottom over the last 6 month so can't have anymore ... what I hate is the constant pain every day . Just be nice to be myself for one day as probably everyone else would like . Thankyou for your advice .

[craigsif]

I take 5mg daily, except the day after the MTX. Recently i forgot to take the folic acid, i didnt think it would make a diffrence,what a first class idiot i am, tirdness, exhaustion,lack of sleep all resulted in my lack of taking it, i am now back on the tablets and i am feeling a whole lot better.

[JayneN in reply to craigsif]

I only take one two days after my mx so I will take more now knowing others are ok doing this . Thankyou

[nomoreheels in reply to JayneN]

You'll run out if you increase it on your own Jayne, that is unless you're prescribed more than 4 a month? They're prescription strength as well so not available to buy, your repeat will need to be changed.

[JayneN in reply to nomoreheels]

My doctor gives me a box of them on prescription so I could take more if needed

[Hidden in reply to craigsif]

Yes, that’s what I was told to take. My rheumatologist said I can have the first dose of folic acid within the 24 hours. So I have it at 18 hours and immediately feel a tad brighter.

[nomoreheels]

It could certainly be your folate levels dropping which is causing the mouth ulcers, not so much the dry eyes, that's likely to be the RD or a secondary cause. The thing is the way MTX works for us is to inhibit the reproduction of the cells that cause the inflammation (lymphocytes). The down side is in doing that it's not able to identify the good cells, it blocks the ones that we do need & in particular the DNA cells we need to replace the ones in our mouth (leading to ulcers) hair follicles (leading to hair loss) & nausea. This is why we're coprescribed folic acid, to try to replenish lost folate, but as it's off license prescribing there are no specific guidelines on dosage so it's very much each Rheumy's preference. Mine started me on just one 5mg the day after but increased that to the day before & the day after when I had some hair thinning. Now after 8 years on MTX my current Rheumy prefers to prescribe it 6 days, so every day except the day I inject.

So it's over to you. Discuss your symptoms with your Rheumy or nurse specialist & see if either think an increase in days you take folic acid is appropriate. I'm pretty sure if they do you'll not have those horrible things any more.

Hope this is of some help.

[JayneN in reply to nomoreheels]

Thankyou so much this really explains a lot . I've got lots of questions I'm going to have with the nurses as still not sure about some things . Much appreciated 🌹

[nomoreheels in reply to JayneN]

You're welcome. I hope your nurse is appreciative of how side effects can become an issue & any other things you need answering are satisfactorily.

[Sweetpolly2016]

I take a folic acid pill everyday

[Ruth12345]

Thank you all for the above info. I take 1 folic acid a week and my hair is dreadfully thin and eyes are sore. Im on 20mg methx, sulphaselazine etc etc. Will talk to Rheumy about it next visit

[Jackadoodle]

I have found folic acid 1x5mg per day apart from MX day benificial for mouth ulcers, if you get a bit run down and get more mouth ulcers my GP has advised me to take 2 per day until the problem abates, you may have to increase your prescription to accommodate taking extra FA.

[vivgibbs]

when I was on Methotrexate I was told to take folic acid every day except for day of inj and if in pain rheumy man said a depomedrone inj would tide me over till mx kicked in, don't put up with pain go back go or consultant, hope this is helpful

[JayneN in reply to vivgibbs]

I've not been told any of this . It's like I've been pushed aside and forgotten . I've got a very high pain threshold but this pain is excruciating all in my hands , chest, back and knees i feel like I'm slowly been taken over . I've just rang my nurse so waiting for a call . Thankyou x

[JayneN]

Thankyou so much yo everyone who has took the time to give me advise ... much appreciated x

[Laineymacd]

I take folic acid everyday

[JayneN in reply to Laineymacd]

I'm taking my injection on Wednesday then Friday I'm gonna start and take a folic acid everyday see if that helps . Thankyou

[janmary]

I was a taking just one 5mg F/A a week, and feeling most nights as though I'd been pumped full of air, then kicked in the stomach by a horse. I was increased to 4 x 5mg Folic Acid a week, felt better. Last week I was away and forgot to take them - the symptoms returned - lesson learnt. But I can't find any sort of info about studies into dosage - it seems to be a matter of guess work. When people say they take it every day - is that 5mg or 1mg or just the small dose for pregnancy?

I suppose studies would be difficult because the vitamin is naturally occurring in food anyway.

hope that the next few weeks you find the MTX starts to work for you

[JayneN in reply to janmary]

Thankyou my folic acid is 5mg so not sure if I can take every day ?

[Cherub198889 in reply to JayneN]

Just to let you know, in North America it is quite common to take 5mg to 1mg of folic acid a day. Even on mtx day. When I was on mtx, I would take the 5mg of folic acid while injecting my mtx dose. After the first 6 months of being on mtx, I lowered my folic acid to 3 @5mg folic acid a week. One of my rheumies said take as much as you need (up to 5mg a day) to control my side effects.

[JayneN in reply to Cherub198889]

Here in the U.K. We're told not to take it on the day of injection or the following day . I'm going to take 1x5mg for 3 days see how I go . Thankyou for your advice x

[vivgibbs in reply to JayneN]

yes you can this is so bad of your team get your doc gp to fight your corner

[nomoreheels in reply to janmary]

I'm in the UK & take 5mg every day except MTX injection day, 5mg is the norm prescribed in the UK & Spain certainly as I was also prescribed it there. Those in the US seemingly are prescribed only 1mg, I'm not too sure but I think that's only country that does.

[Cherub198889]

You should always listen to your country's health regulations. I just wanted you to know that in Canada & the US the "no folic acid on mtx day" rule is not written in stone anymore. They don't know why mtx works for RA, it just does. So the folic acid & mtx debate isn't important overhere anymore, just as long as the mtx is working for you.

I hope you are painfree soon. No one should ever have the need to have a high pain tolerance.

All the best to you

Sue

[JayneN in reply to Cherub198889]

Thankyou Sue really appreciate your advice x

[Hidden]

Perhaps you can get a round of Prednisone to knock things out until the MTX has time to work?

[JayneN in reply to Hidden]

I'm allergic to prednisone unfortunately so can't take that but thankyou for your advice

[Hidden in reply to JayneN]

Well, poop.

[laburnum1]

Hi JayneN. Just a little reply to let you know there is hope. I was in the same position as you a few months ago. In a lot of pain, unable to work and really feeling like this disease had taken over my life. I've been on Methotrexate for about 19 weeks now and it def has made a differnece. I'm not saying I'm cured but my feet have improved greatly. I feel like I'm beginning to get my life back again. Methotrexate didn't kick in for me until at least week 8 I'd say so persevere if you can. I fully understand how low this can make you feel and hope things improve for you really soon.x

[JayneN in reply to laburnum1]

Hi .... thankyou so much for your advice , i don't wish pain on anyone but it's nice to know people are in the same boat as myself . I don't let anything get me down tbh but this has taken hold ( but it won't win) . It seems everything has happened at once . Fingers crossed it works and I have a bit better quality of life . I never thought this disease was so bad . Some of the posts I read are horrendous but here's hoping good health for everyone 🌹

[Arielb]

I was diagnosed one year ago with RA. Wanted to curl up and die from pain and exhaustion. Found a Rheumatologist I love! She did tons of test. Inflammation #s very high. Started me on plaquenel (so) and prednisone to bring #s down. Within a week I was feeling better. Told me about MC-told her I drank so she put me on a biologic called Orencia. Took 6 months but boy, what a difference. I now take 100 mg 2x a day of Plaquenel, a self administered shot of Orencia once a week a 100 mg of folic acid daily. While I still have a bit of pain it is NOTHING like I used to have. I’m surprised more people on this site don’t mention biologics. There are other meds beside MX.

[Lainey61163 in reply to Arielb]

Thank you so much , because I hate the Methotrexate.. I feel like I’m gaining weight and I can’t have 1 drink while I’m on it .. I feel like my whole life is being taken away from me 😢 I’m asking my doctor about that drug

[JayneN in reply to Arielb]

Hi ... that's exactly what I've been told to do my a friend of mine who's a nurse. I hate taking MTX but was told it's the best so when your in so much pain I suppose u just do what your told that works . I'm certainly going to look into this . Thankyou for your advice .

[helixhelix in reply to Arielb]

It depends if you are in the US or UK. In the UK our health service is free, so you aren't given Biologics unless you meet certain criteria because they cost so much more than traditional drugs. £10,000 a year rather than £500. You have to have tried and failed on traditional drugs, and then have a disease activity score over 5.1.

[laburnum1 in reply to Arielb]

Hi Arielb. Apologies for the late response to this message, you may have already received this answer. The reason we mention Methotrexate so often is because we live in the UK. It seems to be standard practice for Rhumatology departments here to prescribe Methotrexate in the first instance. They only seem to prescribe biologics once all other options are exhausted!

Thank you for your message though. It's helpful to know that Plaquenel and Orencia are easing your pain. If I eventually get offered either of these I'll snap them up!