What dose Folic Acid are you taking with 20mg Methotrexate?

[Prof99]

People that are on Methotrexate and Folic Acid - can I pick your brains please? I started on Methx in Dec 2020 with 2 x 5mg Folic Acid tablets (Meth on a Monday, Folic Acid on a Friday). But when I said I felt no effects from the Meth, it was increased to 12.5mg, then 15mg, then 17.5mg and I am now on 20mg, which I believe is the goal, but I have never been told to increase the Folic Acid. What doses of Folic Acid are you taking with your 20mg Methotrexate please? Thank you. (Getting to speak to my Rheumy is very difficult)

[Rachmaninov2]

I know this doesn’t answer your question Prof. but just to say that I am taking 10mg of MTX and have been taking 5mg Folic Acid. I asked my Rheumatologist if I needed to increase it and he said no. My GP thinks I should increase the Folic Acid to 15mg. and has prescribed extra tablets. I don’t have PMR, I have Rheumatoid Disease. I know how difficult it is to speak to anyone in the Rheumatology department. Hope you get it sorted out. 🙂

[Prof99 in reply to Rachmaninov2]

Thank you for taking the time to reply. Keep Well.

[Maisie1958]

Hello, not sure if much help but have taken my first dose of MTX on Sunday- 15mg. Told to take 5mg of folic acid 24hours later. I asked about having more days on folic acid but rheumie nurse said wait and see if actually needed to. They gave me an “instruction booklet” which did say if having S/e increase folic acid to 3x weekly and then could increase to 6x weekly. Do you have access to hospital rheumatology advice line or specialist nurse telephone number? I’m too new to mtx to advise you sorry. Hope you get sorted,

[Prof99 in reply to Maisie1958]

Thank you very much. All these answers are interesting. If I am only taking Folic Acid to stop side effects, then I guess I am fine, as, so far, I don't think I have had any side effects. (I've got so many odd aches and pains it would be difficult to work out if one was a side effect!!)

[Maisie1958 in reply to Prof99]

I took my first dose of MTX in trepidation on Sunday- but have to say didn’t feel anything different, woke up Monday fine. Very early days! Worried about hair loss and mouth ulcers in weeks to come. Pleased you are ok on it. All the best

[GerriMc in reply to Maisie1958]

Also, you might find the MTX makes you really tired. If so, try taking it at night, that way you sleep through the worst of it!

[GerriMc in reply to Prof99]

Hi, I’ve been on MTX for about 3 years. I’m currently reducing it. I’ve been prescribed 5mg of Folic Acid every day except the day I take the MTX. It’s to lessen the side effects, which for me, we’re minimal. I had some hair loss when I started on the MTX but that settled down after a couple of months. I have blood tests every three months to check my liver too.Best of luck!

[HappyDiamonds]

I tried Methotrexate injections a couple of months ago, can't remember whether it was 20 or 25mg. I was initially advised to take 1 Folic Acid tablet but when I reported side effects of sickness, diarrhoea and severe dizziness it was increased to 6 folic acid, one each day except for injection day. This did help a little. I was asked to try a lower dose 10mg injection weekly still with 6 folic acid but still didn't get on with it so I stopped and am now trying something else.

[PMRpro Ambassador]

I think the question is more whether what you are taking is enough for you not to suffer the usual side effects of MTX.

[Prof99 in reply to PMRpro]

Thank you PMRpro - I don't believe I was ever told why I was taking Folic Acid - I thought it was just another protection drug like Alendronic Acid and Omeprozole. As I said above .... I don't think I have had any side effects but I have so many odd aches and pains it would be difficult to work out if one was a side effect of the drugs or just the Enthesitis and PMR. So far, I haven't had any sickness but I have only taken 2 weeks of 20mg.

[PMRpro Ambassador in reply to Prof99]

MTX depletes the body of folic acid because of the way it works - so you replace that. I have noticed some doctors say to take the folic acid before the MTX not after - which is a bit daft, you need to replace it the day after the MTX.

[Prof99 in reply to PMRpro]

Thank you - I will definitely have another word with the Rheumy nurses to see if they think I should take more.

[MrsNails]

Hi Prof, There is some debate as to the optimum dose of Folic Acid, l have been on MTX (that’s the abbreviation for Methotrexate) since 2014 & was started on 10mg MTX & 6days of 5mg Folic Acid increasing to 20mg MTX.

I am currently on 25mg Injections & remain in 5mg Folic Acid on the other 6days. I’ll forward you some information on MTX/Folic Acid but it may be in the morning.

Kind Regards

MrsN

nhs.uk/medicines/methotrexate/

Taking folic acid

“You may be prescribed folic acid tablets while you're taking methotrexate. This is a man-made version of vitamin B9 (also called folate).

Folic acid helps protect the healthy cells in your body and reduces some of the side effects of methotrexate. It can make you less likely to be sick (vomit) or get diarrhoea.

Your doctor will usually start you on one 5mg folic acid tablet, taken once a week. Take it the day after your methotrexate.

If you are still bothered by side effects, your doctor may increase the dose of folic acid. You may need to take 1 tablet 6 times a week, starting the day after you take your methotrexate.”

[Prof99 in reply to MrsNails]

Brilliant - thank you Mrs Nails.

[MrsNails in reply to Prof99]

I’ve written about My Journey with Methotrexate & you’ll find it on FAQ

healthunlocked.com/pmrgcauk...

[Topcar]

I started on 15mg mtx and 1x5mg folic acid in April increased to 20mg mtx after 2weeks and started experiencing hair loss , nasal and mouth sores so folic acid was increased to 6x5mg which has improved those side effects but can't say I've had any noticeable improvement from the mtx and reducing pred below 15mg caused a flare so looks like I'll be trying something different when I see rheumy in 2 weeks time. My rheumy nurse said the option to increase folic acid was there to help with mtx side effects which is why they try the lowest dose first. Fingers crossed mtx will work for you🤞

[Prof99 in reply to Topcar]

Good Luck Topcar - I will be very interested to know if they do move you off of MTX to another drug. Keep well.

[Coffeebeans]

It varies as I understand it but I was prescribed 5mg on all non MTX days' same as MRsnails.

So there is scope to increase if you feel you need to.

[Prof99 in reply to Coffeebeans]

Thank you Coffeebeans.

[dancersize2]

PMR diagnosed Aug 2017 and 15mg pred gave me back my ability to move. Gradual taper until stuck on 6mg pred for six months. My rheumy added 10mg MTX in Jan 2019 and increased it to 20mg after a couple of weeks. I take 5mg folic acid tabs each day other than the MTX day and have done that since. As I have got down to 1/2mg pred daily, I have reduced the MTX to 15, but at the last visit the rheumy advised getting right off the pred before I reduce further.

[Prof99 in reply to dancersize2]

Good luck with getting off Pred. - it is such a task. I have even resulted into going down by 1/4mg to stop my body complaining (I have a nice clean pair of nail clippers that cut the tables up cleanly). I'm at 3 1/2mg now and will go to 3 1/4 after my holiday. For me it seems to be about the % of the total drop - ie A 1mg drop when you are on 10mg is a much smaller % than a 1mg drop when you are on 5mg. 1/2 and 1/4 seem to be working for me - very slow, but steady. Splitting my dose AM and PM also works for me too.

[MrsNails in reply to Prof99]

Probably a bit late now but they do make 2.5mg Tablets & they split very well into 1.25mg - just useful to know 😉

[Joanbill13 in reply to MrsNails]

Can you cut the coated 2.5

[MrsNails in reply to Joanbill13]

No Joan, you need the uncoated ones, a lot of GP’s aren’t aware of them & the Pharmacy often have to order them in but once they know you have them they’ll keep them in stock! They are a very pale straw colour so easy to differentiate 😉

[Joanbill13 in reply to MrsNails]

Thank you

[Prof99 in reply to Joanbill13]

I've never had coated ones Joanbill13 - so I am sorry I can't say if they'd split.

[PMRpro Ambassador in reply to Prof99]

Enteric coated tabs must not be split- it removes the whole point of the coating which is to protect your stomach from the irritant effect of the pred

[Prof99 in reply to MrsNails]

Yes I have had 10mg, 5mg, 2.5mg and 1mg tablets (but I've never had coated ones)

[Prof99 in reply to MrsNails]

Yes, they do 10mg, 5mg, 2.5mg and 1mg.

[xena-]

Hi I'm on 20mg weekly I take folic acid 5mg x6 Days a week just missing on methotrexate day

[Prof99 in reply to xena-]

Thanks Xena - very interesting to see how much difference there is out-there.

[Whatawonderfullife]

I take 15g of Methotrexate and was suffering from nausea and a couple of other side effects. My rheumatologist suggested 5mg of folic acid every day bar the day I take the methotrexate to help with this and it did.

[Prof99 in reply to Whatawonderfullife]

Interesting ............. I am now wondering if Folic Acid is a bit like Vitamin C in that the body just flushes out what it doesn't need.

[Suet3942]

Hello I take it every day except the day I take mx

[Prof99 in reply to Suet3942]

Thank you - an interesting picture is building up here. Best Wishes

[Blackcat1M]

Hi, I take 20mg mtx and 5mg Folic Acid.I took 5mg of folic acid right at the beginning when I started with 5mg of mtx and have never had it increased.

[Prof99 in reply to Blackcat1M]

And presumably no side effects from MTX?

[Blackcat1M in reply to Prof99]

The only side effect I have had over the years taking mtx is bruising on my legs, but nothing that bad it has stopped me taking it, I take it because I have RA.I seem to have been very lucky taking it, my rhymi wants to increase my tablet to 25mg, but I have refused for now,his reason for this, my hands are getting worse,but nothing I cannot cope with, hope this helps, best wishes

[MrsNails in reply to Blackcat1M]

Hi BC I’m in 25mg now by injection as they felt l was no longer absorbing the full dose orally as apparently this is not uncommon.

Maybe they’d consider having your 20mg by injection? You do need to think about the long term about your hands as we need them for pretty much everything we do.

Good Luck 🍀

MrsN

[Blackcat1M in reply to MrsNails]

Hi MrsNails, funnily enough nobody has mentioned injections to me, when I next speak I will ask about it.At the moment my worry is, about five weeks ago I found a lump in my left groin, and they suspect I have colon cancer, so going to see a surgeon on the 20th of this month fingers crossed its only a hernia.

[MrsNails in reply to Blackcat1M]

Oh BC - l’m sorry to hear that! Hopefully it’ll be a little hernia & nothing anymore sinister. Please let us know how you get on, Wishing You All The Best 🙏🏼

MrsN

[Prof99 in reply to Blackcat1M]

Interesting - thank you for taking the time to reply. Best Wishes

[Susan1705]

Hi, I am on 15mg of methotrexate (started 11th July). I am really struggling with the side effect of fatigue. Was prescribed folic acid 5mg once a week and will not see hospital rheumatologist until November. I think I will just increase the folic acid and see if the fatigue reduces as cannot function!!! Other option is to stop the methotrexate.

[PMRpro Ambassador in reply to Susan1705]

The fatigue was what scuppered me - and increasing the folic acid didn't seem to help either. Maybe it will for you

[Susan1705 in reply to PMRpro]

I am not convinced it will. Am very dubious about taking it as my normal rheumatologist was happy for me just to pred rather than another drug with potentially worse side effects. New rheumatologist wants me take as I have failed to reduce down within 2 years. At the moment though I have had to increase pred as diagnosed with GCA, so makes no sense

[PMRpro Ambassador in reply to Susan1705]

Only about 1 in 3 people with PMR is off pred in 2 years. I do wish they would keep up-to-date with the studies that show PMR is a longer and much more complex disorder than they have thought.

I felt like that about MTX - did it influence how I got on with it? I don't think so, because the effects I had weren't the expected ones like nausea. It magnified so-called pred effects like constant hunger and weight gain, bruising and some others - and I had never had them with pred alone! But the fatigue - that was something else!

[MrsNails in reply to Susan1705]

Hi Susan, Unless you have a stock of Folic Acid you can’t buy the strength we take with MTX & really you should run it past your Rheumy Team if you are experiencing problems as the Nurses are very helpful & can offer much sage advice & will always check with the Consultant for you.

Kind Regards

MrsN

[Susan1705 in reply to MrsNails]

Hi, was going to speak to GP. Have found a number for hospital team in my booklet so will ring them. Not sure how important the methotrexate is in the treatment of the GCA, in the 4 doses taken so far I have had about 6 days where I could function. I was on high dose pred 60/50 prior to starting methotrexate and felt really well and no more headaches and blurry vision

[MrsNails in reply to Susan1705]

Always best to run anything like that past the Rheumy Team, GP’s won’t advise. The Nurses are great & have loads of experience. MTX takes some getting used to & you have to adapt for the fatigue, l always took mine on a Sunday, keeping Mondays clear then l was never under any obligation to do anything, which helped enormously.

I had No Choice other than to persevere with MTX due to that side effects of Pred; l could barely walk without getting out of breath, my BP was through the roof & it was affecting my heart.

Have a chat with the Nurses, please let us know what they have to say.

MrsN

[Boss302Fan]

1mg was prescribed by my Rheumy.

[Prof99 in reply to Boss302Fan]

Thank you