Folic acid

[Bootoo]

Any of you wonderful people take more than 5mg a week, I'm at present having a run in with my doctor who is telling me after 3 years of upping it myself when needed, I can only have 1 a week ....am I missing something or did my rheumy team tell me the wrong thing. My rheumy nurse is ringing Tuesday so I will clarify it with her. New doctors eh!

[Hidden]

Originally on 10mg once a week, now on 5mg every day except my mtx day. The purpose of folic acid is to reduce/limit side effects, so if you’re only on 5mg once a week and getting side effects, you need to be taking more, but that needs to be discussed and agreed with your rheum.

[Bootoo in reply to Hidden]

That's the thing my rheumy team said exactly what you have said, my old doctor sorted it, and instructions on my folic acid was take 1 a week but increase if needed. My new doctor says no so have issued 4 tablets for the month 🤷‍♀️ I've a phone call with the doc on Monday so I'll sort her out 👍

[Hidden in reply to Bootoo]

It seems to be very hit and miss with GPs generally: I have GPs that are flexible, and as long as they have something somewhere saying something is ok, they’ll do it. Others won’t do anything unless it’s splashed in size 24 font across the top of every letter they’ve ever received about me. Do you have access to your medical/clinic documents online? If you do and you can find a letter reflecting the folic acid dose (sometimes clinic letters will have it written on), just direct them to that letter. I realise they need confirmation of what’s required from someone qualified to give it for safety reasons, but they also need to remember that as GPs, they’re really not qualified to unilaterally change a consultant’s recommendations. Really not sure why some insist that they are 👀🤷‍♂️

[Bootoo in reply to Hidden]

This conversation is at the minute through the receptionist, because they must go to medical school to work there 😂, the original rheumy letter says 1 a week increase if needed, I wouldn't mind its not that often I take more than 1 but I've a few ulcers at the minute and upping the folic acid seems to help...ah I'll get it sorted one way or the other

[nomoreheels]

I started on one the day after MTX then the day before too when I had hair thinning. This was when I first started it. When I returned to the UK the Rheumy I was allocated said she had all her MTX patients on 6 times a week, so been on that 8 years. Is it your GP who you're having the run in with? If so he has to heed whatever your Rheumy prescribed. If that was one a week then he'll prescribe that. If your nurses or Rheumy think you'd benefit from your folic acid being increased he will have to prescribe the relevant quantity.

Are you copied in on the reports your Rheumy sends to your GP when you've been seen in clinic, or telephone appointment possibly currently? If so check on those to see how many should be prescribed. My meds are listed at the beginning of each report. If you're not copied in ask to be, it's helpful to keep them on file.

I hope you resolve this, it can make a difference as I’m sure you know.

[Bootoo in reply to nomoreheels]

It'll be resolved by Tuesday, I'm a bull in a china shop when I know I'm right 👍😂

[nomoreheels in reply to Bootoo]

Have you not been running out each month if you're taking more than your script says? The thing is with folic acid 5mg it's not actually licensed for this use & in higher quantities there are no guidelines as to how often it should or could be taken with MTX other than once weekly, it's as the Rheumy considers necessary so maybe your GP is taking NICE guidelines as gospel Prevention of methotrexate-induced side-effects in rheumatic disease

By mouth

For Adult

5 mg once weekly, dose to be taken on a different day to methotrexate dose. bnf.nice.org.uk/drug/folic-...

If he has no other patients on MTX & folic acid & your script says once weekly he could be being cautious, not taking your word for it, not that it's exactly helpful. Not everyone takes them every day except MTX day, maybe if it was the general rule he'd concede. Either way he could email your Rheumy & ask the question?

[Bootoo in reply to nomoreheels]

I've always got a pack of 28, think the last time I ordered any was last August, I only up my dose if I'm run down or get mouth ulcers , because my rheumy team told me I could up the dose 🤷‍♀️😂

[nomoreheels in reply to Bootoo]

That's something then. I'm limited to the actual amount I take on my monthly script repeat, 24, but that's fine as I don't take them MTX day. So, have you tried requesting it on a monthly basis, rather than when you're starting to run out I mean? That would solve the problem, then if you build up too many you just don't request them that month or for however long it would be until you start to run low again.

[Bootoo in reply to nomoreheels]

I have never had a problem till Monday when I just got 4 tablets in the tiniest box you have ever seen 😂 I order my prescriptions every 4 weeks and until now never a problem. I've got the doctor ringing me on Monday, and my rheumy nurse Tuesday so one way or another it'll get sorted

[nomoreheels in reply to Bootoo]

How odd. I wonder if the CCG have been on at them if their prescribing budget is rising. That would be something they'd do, reduce your script to actual amount taken each week, if it says once a week. They won't heed the "take more if needed". Not that it's right, they should ask your Rheumy's ok as the initial prescriber, not that they always do of course. I'm sure you'll sort it out, it's petty really because a box costs a little over £1!

[Bootoo in reply to nomoreheels]

I don't pay for scripts now I'm 60 but I would have been a tad upset if I'd had to pay for the 4 tablets at prescription prices 😡😂

[AgedCrone in reply to Bootoo]

Alendronic Acid is prescribed in teeny 4 pill ,boxes....was there any discussion about your bones when you last had a prescription review?

[Bootoo in reply to AgedCrone]

sorry didn't see your post, wasn't ignoring it. It was definitely my folic acid, it said on my prescription copy that it was now 4 folic, I bet the chemist had to hunt for the tiny box, and I bet they thought "really" 😂 The only thing wrong with my bones is they weigh too much...Its nothing to do with lockdown extra chocolate 🤷‍♀️

[Hidden in reply to Bootoo]

I also used to be given just 4 - a fiddly job for the people at the chemist's cutting them off a bigger strip. I had to reorder that and the MTX by the calendar month, but always got exactly 4 weeks' supply. I wrote to the pharmacist at the GP surgery and pointed out that in some months I would be left short as, for example there would sometimes be 5 Fridays (the day I take folic acid). The pharmacist was great. He said folic acid is dirt cheap and he would change my prescriptions to give me a full box (28) every 6 months, for which the local chemist is no doubt grateful. The MTX was solved in a different way by just having a bit of flexibility about reordering.

[Bootoo in reply to Hidden]

Ah I never thought of 5 days in some months ...👍 this is turning into a saga......to be continued next week 😜😂 I get my mtx through health care @home 8 at a time so no problem there

[Hidden in reply to Bootoo]

I have found our GP practice pharmacist to be very sensible, friendly and a great ally.

[Pythagorus]

Hi Bootoo, I take 5mgs a day except the methotrexate day and have done for years.I would suggest you discuss with the rheumatoid team and if your consultant is in agreement request he sends a letter to your GP. Good luck

[Bootoo in reply to Pythagorus]

I'm speaking to my rheumy team on Tuesday so I'm sure it'll be sorted 👍

[Boxerlady]

I'm on 6 x 5mg a week; I was originally prescribed that by the rheumy and then started getting it through the GP when it became shared care. I suppose that you might need to ask your rheumy to specify 6 tablets a week so that the GP has to prescribe that much and then decide for yourself how much to actually take 😜

[Bootoo in reply to Boxerlady]

I'll do that Boxerlady, I'm not worried about ruffling the doctors feathers 😂

[springcross]

Hi Bootoo. I was told from the off by my rheumy doctor 5 mg a day for six days (not on MTX day).

[Bootoo in reply to springcross]

🤷‍♀️ seems my doctor doesn't understand this is the norm, all will be sorted next week 👍😂

[springcross in reply to Bootoo]

🤞 x

[bubblyalex]

Errr I am on 5mg 6 days a week. So 30mg a week. Rheumy wins out lol. I am ok MXT and was losing my hair so they upped the folic acid and dropped my MXT dose down to 15mg sub cut. Good luck with your Gp🍀

[Bootoo]

Thanks bubblyalex, I'm sure it'll all be ok in the end

[AgedCrone]

Please liisten to your rheumy team... it doesn’t matter how much Folic Acid everybody else takes you are seeing a highly qualified consultant who knows what he’s talking about so please listen to him ......not advice from a qualified well-meaning amateurs,

[Hidden in reply to AgedCrone]

I agree with you on this principle as always AC, but the issue here is actually that the rheum has said ‘one a week, increase as needed’, and the new GP is ignoring the increase as needed part to instead only prescribe 4 tablets a month. The rheum had already said Bootoo can take more as required, and they’ve been happily doing so for the last 3 years.

[Bootoo in reply to Hidden]

oops I seem to have opened a can of worms here 😬

[Hidden in reply to Bootoo]

😂 Not at all! AC is absolutely right in that everyone is different and that the professionals are the ones best placed to make calls about medication, not us well meaning amateurs, but it defeats the object when it’s the GP wading in with their size 10s and doing just as bad a job 🤣

[Bootoo in reply to Hidden]

😂 I daren't mention my painkillers ain't doing their job 🤦‍♀️😂

[Hidden in reply to Bootoo]

With us or to the GP? 👀👀🙈🤣

[Bootoo in reply to Hidden]

Both.....but you lot are more frightening 😬

[Hidden in reply to Bootoo]

😂😂 I like you, you can stay👍

[Bootoo in reply to Hidden]

Thanks 😘

[springcross in reply to Bootoo]

😰 😂

[springcross in reply to Bootoo]

😂

[AgedCrone in reply to Hidden]

Tbh....the GP probably doesn’t even know why you take the FolicAcid...mine didn’t when I was in Mtx.

[Bootoo in reply to AgedCrone]

My last doctor who was the most wonderful woman on earth told me they only get a couple of weeks training for RA and she would ask me what was what, I've only seen my new doctor once because of lockdown. I was called in because a locum noticed my bloods weren't normal, and the new doctor asked if it was my normal....I thought I was in with a chance with her 🤷‍♀️ I'm hoping she doesn't know about folic acid and mtx like yours 😂

[AgedCrone in reply to Bootoo]

I am at the stage now I just smile & sayI feel fine if my GP ever mentions RA...let alone RA drugs!

[Bootoo in reply to AgedCrone]

😂 I'm beginning to think that's the best idea, I'll leave the hard questions for my rheumy team 😜..(who are brilliant)

[Gottaloveastaffy]

I have 5mg every day 😊

[Bootoo in reply to Gottaloveastaffy]

wish I could but with only 4 tiny tablets 🤷‍♀️😂

[Gottaloveastaffy in reply to Bootoo]

The hospital issued this and just before Christmas the GP changed it to twice a week I started to feel worse and worse and had to contact the hospital a couple of weeks ago they said that the GP should not have changed and I should have every day and contacted them to let them know I’m back on every day again now and have stopped feeling really sick but it has taken a couple of weeks for that 😩 I’m hoping this Saturday I won’t feel sick at all 👍 hope you get sorted

[Downtime]

Was on 5mg weekly now I take that amount for the 3 days following Mxt . It’s got rid of my mouth sores and helped my hair.

[Bootoo in reply to Downtime]

Exactly, you know your own body and I know if I get ulcers upping my folic acid helps 🤷‍♀️ please tell my doctor

[cpr02]

Maybe best to listen to your gp and take it as prescribed- whilst there not always brilliant he must have a rational for asking you not to take more in my experience it's never good to self medicate although I am aware it's only folic acid am sure if rheumatology are happy with or want you to up the dose they can tell him that .. seems a bit vague instructions just to up it as and when X

[Bootoo in reply to cpr02]

I'll be hearing the rational excuse when she rings me on Monday 😂

[orange33]

I have never really been advised one way or another. One said take more another said take less so went back to what I was originally prescribed three times a week I will add I am on a very small dose of mtx.

[Bookworm55]

I take 5mg six days a week- not on mtx day.

[vwtopaz]

Hi, I have just been prescribed methotrexate and folic acid by my RA Consultant yesterday-directive take one daily missing out on the metho day, if that’s helpful.

[Garnacha]

This thread is really interesting, with only being diagnosed with PsA in November and being prescribed MTX aswell as 5mg of folic acid to be taken once a week 2 days after the MTX, I knew it was to help with any side effects and mentioned to the rheumy at my first checkup since starting MTX that I'd had a few mouth ulcers and felt sick for a couple of days after taking MTX but he didn't say to increase the folic, to be honest, the mouth ulcers are getting less & less so perhaps I've built up a resistance to them a bit, I know what you mean Bootoo re the small boxes 😂 I've had both extremes, a huge box with 4 tablets in and a tiny box with 4 😂.

If the ulcers return badly I will ask if I should increase the folic dose.

Thanks everyone for the info x