Folic acid

[Jacey1840]

Hi all,

I'm new here and never used anything like this before. Reading some of the posts and replies looks a great thing to be involved with. So lovely to see all the comments of everyone supporting each other.

I was diagnosed with RA around 25 years ago and have never had any contact with other sufferers. What a help it is to see that other people have similar daily struggles.

I was wondering if anyone knows much about the amount of folic acid you need to take when on methotrexate. I have always taken 5 mg once a week. My doctor wonders if I am taking enough as seems to think I should take it every day apart from methotrexate day. I'm going to have a blood test to check the levels but just wondered what other people do?

[Matilda_1922]

Hi and welcome

I take folic acid 5mg every day apart from day of MXT. I was advised due increased nausea to increase to 10mg the day before and day after MXT a couple of months ago and to continue with 5mg for 4 days. I think it's a lot to do with the department/consultant when deciding how much folic acid you take but generally it's every day apart from day of MXT.

Matilda

[Jacey1840 in reply to Matilda_1922]

Thanks Matilda,

I've been getting quite severe vertigo which has been making me sick and effecting my hearing. Doctor I've seen wonders if it could be because my folate levels are low. Think it was just a thought but seemed a bit alarmed that I had only been taking folic acid once a week.

[AgedCrone in reply to Jacey1840]

Speak to your Rheumy about the vertigo ....I was taken off Mtx after 7 years due to that side effect......it went away after a couple of months....together with the other symptoms like a head full of cotton wool,nausea & generally feeling whoozy. I resisted at first as Mtx had been the wonder drug for me....but I realised when I stopped taking it how much better I felt. I did try to start taking it again, but a month later the symptoms returned.....so bye bye Mtx.

[Jacey1840 in reply to AgedCrone]

Hi

Thanks for this that is interesting. I have taken MTX for the last 9 years and had started getting vertigo about 5 or 6 years ago. At first it only happened very occassionly but seems to be increasing in frequency now.

I also took MTX early on in my diagnosis (which would have been in the early 90s) for a few years I think but was taken off due to poor blood results. I can't really remember what the problem was as was a long time ago.

I have mentioned the vertigo to the rheumy I have seen recently but she dismissed it and said it wasn't a side effect of MTX.

I am now waiting to see an ent consultant and looks like all my symtoms are pointing towards Ménière's disease. This really scares me because I have wondered if it is a side effect of MTX rather that a different illness that they will give me additional drugs to take. I will ask the rheumy again and also the ent consultant if it's possibly linked. So hard to know what to do .

So good to here other people's experience. Thank you so much for your reply.

[AgedCrone in reply to Jacey1840]

Can you ask if you can come off Mtx & see how you are? I don't know what other meds you are on, but I came off & had a Depo injection to help with any pain & that was when the "fuzzy" feeling started to fade & I realised what it was like to get back to " normal".

It would suddenly strike me that my head wasn't full of cotton wool & I could turn my head quickly without getting dizzy.

Worth a try?

[Jacey1840 in reply to AgedCrone]

I think I will definitely be questioning this further. Will see what they have to say. Thanks again am finding all this so helpful.

[Suki1088]

Hi Jacey and welcome, I am new here too but it seems like a good place to meet and discuss issues with people who are in similar positions with their health.

With regards to folic acid I take it everyday. I used to take it once a week but I began to suffer quite badly with MTX so my dose was increased. You may be fine on the lower dose but I think it is also good as a preventative to future possible side effects.

[Jacey1840]

Thanks Suki,

Going to get booked in for the blood test and start taking it everyday except MTX day from now on.

I'm seeing the rheumatologist in a couple of weeks so will mention it then.

[Bookworm55]

I think it partly depends on any side affects from the mtx. I started on mtx at diagnosis last Feb and was prescribed 5mg folic acid once a week. This was then inc to 3 X a week by the rheumatology nurse as developed mild headaches . At my latest cons. appointment she inc it again to every day except mtx day as I had had side effects when the mtx dose was increased. I do seem to be suffering from fewer side effects now.

[Jacey1840 in reply to Bookworm55]

Thank you, seems most people are taking more than me. I definitely need to discuss this with rheumy at my next appointment.

[Joy_1 in reply to Bookworm55]

Hi Bookworm55,

I was getting what I called my Metho headache despite taking folic acid everyday except MTX day. My Consultant dismissed the notion.

A number of folk on the forum said to drink lots of water on MTX day. I started doing this 3 weeks ago and for the last 3 weeks I have not had my Metho headache - yippee and a big thank you to those that suggested it.

[Jacey1840 in reply to Joy_1]

Another amazing tip. Will definitely be starting this. Thank you

[Gigi71]

Welcome to this very friendly forum. I only joined recently even though was dx 31 years ago. It's been a wonderful help. In answer to you question, I have folic acid 5mg everyday except Mtx day. Helps with the side effects. Good luck.

[Jacey1840 in reply to Gigi71]

Thank you so much

[nomoreheels]

Hiya Jacey & welcome, I hope you find it helpful being here with us, there's little we don't discuss so we're not easily shocked!

There's no hard & fast rule on dosage for folic acid so it's really down to each Rheumys preference so this could be why your doctor wants to do B12/folate bloods, if other patients under other Rheumys are prescribed it more frequently. There is the thought that too much can reduce the effectiveness of MTX & why most often we're told not to take the two on the same day though. I've been on MTX nearly 7 years, starting as most do on tablets & just the one 5mg FA the day after MTX, that was increased to the day before as well when I had a dose increase & with that came nausea, hence the increase. I've been on injections about 6 years, presently 17.5mg, & since I changed Rheumy I'm prescribed FA 6 days a week & really have no side effects, I'm just a bit more tired the day after & a little less appetite so I really can't complain.

Something to consider if you haven't already that is, if you do increase it you'll need to arrange to have your repeat prescription amended otherwise you'll run out! Silly I know but it's little little things like that that get forgotten. Anyway I hope it helps & also you enjoy being in our happy gang.

[Jacey1840 in reply to nomoreheels]

Ah yes thanks for this sometimes the little details like increasing prescription are missed. To be honest though i am thinking that it's my fault as the doctor seemed to suggest that my prescription gives me enough to take once a day apart from MTX day. That was the reason she questioned it because I haven't had a prescription for a while as I get so many tablets each time and was only taking 1 each week.

I don't think I spend enough time with my rheumy when I go. I certainly never really ask many questions, as long as I have felt reasonably ok I'm just in and out of the appointment. everyone on here seems so much more knowledgeable about their treatment. I've always been a bit in denial that I have anything wrong with me, even after 25 years, stupid I know.

I wish I had found something like this before.

[nomoreheels in reply to Jacey1840]

Ok, so if you've been prescribed it as every day except MTX day your box of folic acid will be 24 a month (if your pharmacy dispenses to the tablet). It's easy to not take in everything at Rheumy appointments but maybe this is a reminder to also check the directions on the label on the box. Sounds like your GP is on the ball though in noticing you not requesting repeats so that's good!

Because time with our Rheumys is so 'precious' what many do is prepare bullet point lists (I have one ongoing from my previous appointment that I add to when questions I want to ask or symptoms come to me). This way I find I use the appointment better & things that I need to discuss or question are dealt with. It might work for you to, it could be that 'reasonably ok' could be improved upon if your Rheumy knows what that that means to you if that makes sense.... because I think it's easy after a while to think that some things are an acceptable part of the disease when actually they may not be. I'm glad you've found us, maybe being here you'll recognise what's 'the norm' & what's not, that can only be good for you I think!

I don't know if you've come across it but as well as the site you might also find the NRAS website helpful, there's lots of info on treatments & much more nras.org.uk

[Jacey1840 in reply to nomoreheels]

Gosh you are absolutely right and I have been totally ignoring the label. Just been doing this for so long with the feeling that's it's just something I have to live with.

I've been focusing on crazy diets and trying to make myself feel better. It's not so much the pain that gets me as I think I have got used to that over the years. It's the feeling of being so tired that gets me. The last 2 appointments I have had at out patients I have been given steroid injections and have had a sense of feeling normal. Unfortunately it's wearing off now and I can really see the difference.

I love your idea of writing a checklist. I am off work at the moment with this horrible vertigo so it's giving me a bit more chance to think about this. I took my MTX yesterday and to be honest notice this morning that the tinnitus I have been getting has intensified. Also feel fuzzier:dizzier than yesterday. Maybe a coincidence but I think defo something to keep in mind.

I have had a look at the site you mention, it's how I found my way here. I signed up as a member so am hoping to get some good info in the future.

I am thankful to you all and that doctor that I saw as she definitely was thorough with looking through and checking my records.

[nomoreheels in reply to Jacey1840]

Just to touch on the tiredness Jacey, fatigue is a common symptom of not being as controlled as you could be so it's definitely something I would add to a list if you do choose to do one. If you haven't had a med review for a while it could be you're due for one?

The other thing, if you asked if the vertigo/tinnitus/fuzziness/dizziness, could be related to the MTX this is maybe why it was dismissed. But, as you know, they could be symptomatic of Ménière's Disease or even AIED (Autoimmune Inner Ear Disease), we do have the propensity to collect other autoimmune diseases unfortunately lol! So certainly mention all those symptoms to your Rheumy even though you're waiting to be seen by ENT because if it is AIED it could well come under his/her remit med-wise. x

[Jacey1840 in reply to nomoreheels]

Thanks again and I have already started to put together my list of questions. This is such good advice and feeling more in control than I have in years.

I love your user name btw. Has been a sad thing for me over the years to see all the lovely shoes available but always have to go for the sensible option

[Moomin8]

Hi, I have 20mgmtx via an injection on a Monday then on Thursday through to Sunday I take 5mg of folic acid. I don't notice any side effects from mtx. Good luck with your journey 🙂

[Jacey1840 in reply to Moomin8]

Thank you, hope you don't mind me asking but how come some people have MTX in an injection and some tablets? Do you know?

[Moomin8 in reply to Jacey1840]

Hi- I started with tablets of mtx (which was increased from 10mg to 20mg over months) and 1 folic acid tablet 3 days later but I was getting a lot of mouth ulcers and not having any change with my disease I was changed to more folic acid to tackle my mouth ulcers. To try and have more of an effect on my disease I was changed to injections as I was told rather than nearer 60% of mtx getting through with the tablets I'd get nearer 80-90% with the injections. The tablets suit a lot of people and they're fine- they're also a lot cheaper than injections.

I hope that answers your question?

[Jacey1840 in reply to Moomin8]

Thank you for explaining this

[Gigi71 in reply to Jacey1840]

Hi Jacey. If you look back on some of the posts relating to methotrexate and the answers, as I believe you have signed up now. It's one of the most popular posts. I have only been on mtx 10mg tabs, for11 weeks and was very apprenhsive, I did get an upset stomach, but this has improved, I also take it at night helps with the tiredness. I was previously on Azathioprine for 31 years, but changed due to recent skin problems. It seems that if people have too many side effects, changing to the injections helps them to tolerate it better. We are all different. I am also on Humira this has been the the best treatment for me. Hoping you sort out your ear problems soon. Take care. X

[Jacey1840 in reply to Gigi71]

Thank you, 2 days in and what wonderful ideas/advice I have had. I will definitely be switching to take my MTX in the evening. Makes so much sense to do that, never thought of that

[AgedCrone]

Most rheumatologists do seem to prescribe taking 5mg FA to be taken every day except the day you take Mtx.

[ElizabethAnneM]

Hi! I asked my consultant last week about how much folic acid to take as I only take it once a week, whereas I had heard a lot of people on here say they take it more often. She said it depends on the side effects you experience and to what degree, things like mouth ulcers.

As I am not experiencing any particular problems she is happy with the small dose currently.

[Jacey1840 in reply to ElizabethAnneM]

Thank you ElizabethAnne

[Sfmh2026]

I take a 5mg folic acid daily even on mtx (Rasuvo) day. I also take Biotin 10,000mcg , vit d3 5000iu, 1-2 iron pills, generic theragram M, and B Stress vitamins. I take Rasuvo 20mg weekly . ..and Humira 40mg every OTHER week. If I forget my vitamins etc I feel like death. I have other prescriptions for other issues . ...but this is my folic acid vitamin cocktail presently . ..😊😊

Finley🌹

[Jacey1840 in reply to Sfmh2026]

Thank you Finley