I'm in my 3rd week of methotrexate with, thankfully so far, no noticeable side effects. I am, however, decreasing my prednisolone by 2.5mg every 2 weeks (and increasing MTX by 2.5mg every 2 weeks, different week/day) which means that my symptoms are getting worse - it's all still early days for me. My rheumatologist prescribed folic acid to be taken the day after methotrexate but my doctor is now saying to take folic acid every day to see if that helps. I asked if I needed to take a day off on methotrexate day and she said no.
Obviously I'm no expert but I thought the reason for taking folic acid on a different day was because the methotrexate doesn't work as well if you take them together? So do I take it every day? Just the day after? Or some other combination? I've just spoken to the 'specialist nurse' and she seemed to know even less than I do, which is pretty good going as I know precious little!
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Whippet_lady
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Hi, I take folic acid every day except on the day I take my methotrexate. When I first went on methotrexate I had terrible nausea, that's when they prescribed the folic acid. X
There is a methotrexate expert patient on the PMRGCAuk forum - Mrs Nails.
All the instructions I have found from hospital units say to not take folic acid on the day you take the methotrexate - but further reading suggests that it may depend on why you are taking it.
"Methotrexate interferes with the way your body breaks down folate.
When you take methotrexate, you can develop levels of folate that are lower than normal. This is because methotrexate causes your body to get rid of more folate as waste than usual. This effect causes folate deficiency. [which is what causes the side effects]
...Taking folic acid with methotrexate doesn’t decrease methotrexate’s effectiveness in treating your RA.
When you use methotrexate to treat RA, it helps decrease pain and swelling by blocking certain chemicals in your body that lead to inflammation. Methotrexate does block folate, but the way it treats RA seems to be mostly unrelated to blocking folate.
Therefore, taking folic acid to make up for the folate you lose from taking methotrexate helps reduce the side effects of folate deficiency without affecting your treatment of RA."
So it appears to depend on WHY - i.e. if it is for RA it makes no difference, in other disorders the methotrexate may be working on your illness via the folic acid pathway and so it is silly to add it on the day your take the mtx.
I was told to take folic acid the day after the mtx - it didn't prevent the hair loss and fatigue that were far and away the worst effects even when I increased it. Everyone is different - some are fine on 1mg/day, others are fine on 5mg 1x weekly and others need 6x5mg weekly!
I was on Methotrexate . Had to take once a week and folic acid every day except on the day of taking methotrexate .
I did not feel I had any side effects on this med . But my liver suffered , this is why you should have blood tests every 2 weeks . Make sure these bloods are looked at , as mine where not and my liver function went upto 92 . Got a tx from practice doctor when he noticed this , said come off immediately and call up rheumatology?
No one was was actively monitored my blood tests . Asked nurse who monitors the blood tests , answer , somebody does ??
But Who ?? Seems mine had been overlooked some how .
I've only had two blood tests, related to MTX, so far. One before I started with ALT(?) at 12 and one last week, when MTX was 7.5mg, with ALT at 24. I asked the doc about that this morning because I don't understand any of it and she said it would have to get to three times the max normal limit, about 155, before they considered it a problem. I was quite relieved by this but having read that you were taken off it at 92 I'm not so sure. Did you have any symptoms at all that suggested anything wasn't quite right? That's another thing, I have no idea what ailments relate to what and it's so different with everyone that I can't get any definitive answers. Every time I mention anything to the rheumy he says it's not a symptom of lupus so must be down to something else. I'm losing faith already.
Some rheumatologists think lupus is joint pain, rashes and pleurisy only...I twice sat through mine describing and drawing (!) pleurisy thinking if I had it, I'd have seen my GP...now seeing my MP instead of my doctor LOL!
List your symptoms here in a post if you like and I'm sure folks will come along to say yup, had this one and that one and my wonder doctor figured it out!
Wow your doctor says 155 would be considered not normal , consult another doctor , at 92 I was taken off by rheumatology and then put on Azathioprine . That made me incredibly poorly and sick , I’ve been flaring quite badly , so had to go into hospital for high dose of steroids , rheumatology advised holding back on further meds due to covid virus . Told to shield until treatment can start .
Your liver function is within normal limits .
But do keep a track on your blood tests .
Three times would be 120 . Has 40 is top of normal scale .
GP said normal was 'about 50' and 3x that would be a problem - beggars why 50 is normal if you have to wait until it's 3x?! Doesn't make any sense.
Anyway, I will be phoning for my alphabet results (Hb, ALT, MCV, WBC etc) after every 2 weekly blood test. I might not understand what they all mean but I can see if they're going up or down and question it. Would be helpful if I knew whether they were supposed to be high or low, presumably higher is good for some and lower good for others? And whether increasing or decreasing levels were good/bad?
If symptoms are returning to quickly then it might be that the pred reduction is to quick. Everyone is different. You might want to discuss reducing your steroids at a slower pace. 1mg tablets are available. It's better to take it slow and steady instead of bouncing back.
Hi whippet lady, you've been thrown in at the deep end with new lupus diagnosis and being put on MTX. I've been taking it now five months and am getting a similar sudden liver reading which needs monitoring monthly instead of three monthly. Your GP is wrong as you don't take folic acid on the day you take the MTX dose!. Also it's taken five months for the drug to be really benefiting me so your trying to reduce steroids as well is too quick!. No wonder your suffering!. When I'm refucing I only do 1 mg or 0.5 mg at a time fortnightly or monthly so you might like to discuss this with your Rheumy nurse!. Do hope you have one as they are so helpful and are a link to the Consuktant!. Hope that's helpful and I hope you don't get any side effects. Keep well and safe Xx
I phoned the specialist nurse yesterday and she knew less than I do, and I know precious little! The rheumatologist has phoned me this morning. He's reluctant to increase my steroids again because he says I've already been on them too long (3 months or so at 20mg) and they have started to have a negative effect in other ways, though he will, temporarily, if all else fails.
I'll see how it goes and ask about a slower reduction if it gets worse. Thanks for replying.
Some 'specialist nurses' are specialist to rheumatology not lupus - as it is at my hospital - and some rheumatologists are afraid of 'liability' from side effects from medication rather than find the right course for each individual lupus case.. xxx
Whilst whippet lady your steroid dose is high 20 mg for three months is too much for long term. Your Rheumy isn't allowing enough time yet for the MTX to be working so it would be easier to reduce the steroids!. MTX can take months to work. Sometimes people need a steroid injection to tide them over till the drugs kick in but of course that's not possible yet to do because of covid worries!. I'm glad you might ask about reducing more slowly as I think that would be better. Good luck Xx
I have been on methotrexate for several years and have always taken folic acid every day EXCEPT the day I take metho. This is advised by both my GP and my rheumy .
I take folic acid 6 days a week and then methotrexate on the 7th day. Folic acid reduces the impact of the methotrexate so you don't want to take them on the same day.
I dont see why they are rushing ur steroid reduction until u are more established on ur mtx and more controlled? What actual dose of pred are u taking daily?
I'm on 10mgs pred daily and usually on 5mgs daily for past 10yrs plus even when on other immunosuppressants. I've been on mtx now for a few months but b4 have tried azathioprine and mycophenolate.
If u are still unwell tho I don't see why they are pushing to reduce ur steroids, if they want to reduce them atleast do it slower.
12th March - Started on 20mg/day prednisolone, before lupus diagnosis because symptoms became so bad and all blood test results weren't back yet. This, to me, seemed like an overnight miracle cure - joints eased immediately, everything else took a bit longer (rash on back has never gone).
12th April - Down to 15mg/day pred and started hydroxychloroquine 200mg twice a day, symptoms got worse again so...
23rd April back up to 20mg/day pred
21st May - Pred down to 17.5mg/day
26th May - Start methotrexate 7.5mg/week
4th June - Prednisolone down to 15mg/day
9th June - MTX up to 10mg/week
The rheumatologist is reluctant to increase my steroids again because he says I've already been on too high a dose for too long and they have started to have a negative effect in other ways, though he will, temporarily, if all else fails.
The MTX was delayed because of covid but it got to a point where they couldn't delay any further. I could do with something to act as a halfway house between the pred reducing and the wait for the MTX to kick in properly.
I have been on Methotrexate for years was initially told to take methotrexate on Monday and folic acid on Friday have had periods of taking Folic acid more often when methotrexate made me very nauseous but never on same day as methotrexate.
Been on methotrexate for 18 months now and I take one folic acid the day after. Metho and folic acid do not work when taken together. Hope you feel better soon
I am also taking Methotrexate. My Rhuematologist has me taking Folic Acid everyday. I haven't had any bad side effects, except for last couple of days. Have been feeling way more tired & feeling weaker in my knees, lower legs, fore arms & hands. Could be anemia, which can be a side-effect of Methotrexate. I am due for more blood tests, so will know on that soon. Neuropathy in feet and hands has gotten a lot better, don't even have it some days. As for all over aches & pains, they have gotten better. Chest tightness & breathing got so much better, but going down to 10mg Prednisone from 20 mg, it is still good, but not as great as it was. I also take 300mg Gabapentin b4 bedtime & 30 mg Cymbalta daily. Do you take anything for pain? It has taken a really long time, lots of different Drs. & 2 Rhuematologist to get where I am today. Autoimmune takes a lot of patience & the right team of Drs. Neither is an easy thing. Keep at it, look for new Drs. when needed
My joints aren't too bad at the moment - I have off days but I can manage them with paracetamol for now. I'm getting more tired/lethargic again but I don't know if that's down to MTX or reducing pred - I have no idea what's going on! It's the rash in my mouth which is the main problem. It's not ulcers and it pre-dates the methotrexate. It was just starting before I started prednisolone then went away but as soon as I reduce the prednisolone it's back with a vengeance on the roof of my mouth and in patches on my gums which makes eating and cleaning my teeth very difficult and really painful. The rash on my back, which did ease a little but has never gone away yet, is getting more itchy again too.
Oh, and the looking for new doctors thing isn't an option where I live - low population, large area, rural, at least an hour and a half by car to a city with facilities and the nearest city sends doctors down to our hospital anyway so they're probably the same ones, next nearest city two and a half hours-ish away by car.
I don't like lupus. Can I take it back and get a refund?
Rash could be Psoriasis, you can get it in your mouth too. I thought I had scabies for @ least a year!! I would be up 1/2 the night itching my skin off! Had it on my back, shoulders, around my face. 3rd outbreak, I got it practically everywhere. Drs. had no clue as to what it was, all they could tell me was it wasn't scabies, but WHY so itchy & crawly-feeling?? Benedryl helps w/itching, but take @ night will probably make you tired. Raw coconut oil (can add raw honey) helps with rash/sores. My Rhuematologist is about 1 & 1/2 hrs away. There are exactly 2 on my plan & closer one (45 mins away) is truly bad. A good Rhuemy's worth the drive & possibly might do tele- visits after intial encounter, mine does. Hope you can find the answers you need
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