This is my first post here as I have just been diagnosed with RA after the first signs started the day of my first flu vaccine and then in force the day after receiving the booster vaccine (Moderna) just before Christmas. The consultant thinks there is a good chance these either brought it on or acerbated it. I already have hypothyroidism.
Although, I hate taking any medication, as my mother had RA and had severe joint damage, I have agreed to try Methotrexate which I am due to start tomorrow eve after eating and due to having a sensitive stomach I have been told to take Folate every day apart from the day I take Methotrexate to prevent any potential nausea and stomach issues.
Therefore, I am wondering if anyone should see this post this evening, if they would be kind enough to advise if I should take a Folate tablet this evening in preparation for tomorrow as I am really concerned about the nausea/sickness side effect and want to do everything possible to prevent this.
Many thanks in advance.
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JanieJ
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Welcome to the group Janie. I hope you find it useful. If you haven’t already, have a look at the NRAS website for lots of useful information and publications to help you. I’m sorry but we can’t tell you when or if it’s ok to take your meds. Bear in mind though that many people take methotrexate and have no or mild side effects, you may have some but they can diminish the longer you are on it but don’t go looking for them. Do keep hydrated on the day and the day after taking it as this can help too 😊 Let us know how you get on and feel free to ask any questions you have. We are here to support you 🤗
Thank you so much Kitty for your reply and warm welcome, it is much appreciated and am sure I will need all the support I can get in the future.
I am feeling quite anxious about taking it particularly as I really hate feeling nausea and/or sickness and will do anything to prevent this. I have a very busy and at times stressful life and cannot afford to feel unwell each week on top of managing the issues RA is presenting, which are minimal at the moment. I am trying to keep a positive mind set though.
When I discussed this with the specialist nurse she advised that I take folic acid six days a week so I am presuming it helps prevent this?
I must admit I have been floored by the diagnoses as it came totally out of the blue. The fact that it has been more or less accepted that the vaccines triggered it also makes me reticent to have any more boosters.
Well today is day 1 so I will bear in mind all you have said and will let you know how I get on.
You’re welcome. Yes the folic acid should help with nausea, if you get any. I’ve been taking methotrexate for 25+ years and the folic acid stopped my side effects. Good luck.
I have such an aversion to sickness and nausea it is putting me off taking them and thinking of waiting until next week until I can talk my concerns over with the nurse again. I could maybe tolerate mild nausea but sickness no. I doesn't help that the last medication I had to take made me feel so ill that I was up all night pacing around.
I am also so busy that I cannot afford to feel unwell.
In addition I have a very sensitive stomach which I have worked hard to get into a good place. Someone has advised that her consultant suggested staggering the dose ie 2 at breakfast, 2 at lunch and 2 in the evening to prevent any stomach issues. Have you heard of this?
I too have an aversion to being sick, I suppose the thing is that when I started taking it there were no sites like this and hence no one to tell me of all their side effects and how awful it made them feel. I just took the methotrexate because I was desperate for something to help my RA. You do have to remember that a lot of people here are people who aren’t doing well on their drugs or are newly diagnosed and are seeking support. There are many more people out there for whom methotrexate is a success and they are off getting on with their lives and don’t need to post in groups like this. Try not to overthink it as you will then cause yourself problems that aren’t anything to do with the drug. Did keep talking to us for support though and I hope you do decide to take it tonight. I’ve just taken mine so I’m there with you 🤗
Don’t think if you continue to anticipate feeling sick …you will?
Nobody likes vomiting….& not everybody is affected that way by Mtx.
I took Mtx very successfully for 7 years & never had any nausea at all.
I read the PIL….& forgot it…..not everyone feels sick, & OK, not everyone takes Mtx successfully…..but an awful lot of people take it very successfully for many years…….so just stop thinking it won’t suit you, & look forward to being one of that group.
Hi there JanieJ.Drinking lots of fluids on the day helps as well.
You might not feel sick. I hope you don't. I just feel queezy sometimes not all the time but if I overdo things I seem to fall in a heap easily. I also have some treats that seem to boost my general well being on the day after. It's been years that I have been taking it and I know it helps. Injection has been better for me as well.
I give it early evening that way I sleep through the worse.
Can I ask if you feel unwell each week after taking it? Also, have you been on the same dose all the time? I am hoping that in time I would be able to have the dose reduced to a minimum but do not like the sound of each week feeling unwell or wiped out, especially as I would struggle work wise.
Also, feeling sick would be bad enough for me but if I were actually to be sick, I would not be able to continue taking them as I have a real aversion to feeling or being sick, even the thought of it is making me feel quite anxious as you can probably tell!
Hi JanieJ.I started on a small dose of tablets and then increased over time up to 15mg. I have no nausea just tired, the only time I did was when I increased my dose. A blah feeling for the day is what I mostly feel. After a few years I wasn't on top of the swelling and was experiencing terrible reflux and I started injections. I improved with joint pain and my inflammation etc.
I have been on methotrexate for 15 years. It's a fine balance but I am pleased with how my joints feel compared to years ago.
I personally wouldn’t take folic acid before. The idea behind it is replace the folic acid that is depleted by the MTX. At the moment your levels will be normal. I take it 6 days a week, omitting MTX day. I take it at night and don’t get any nausea from it and very little fatigue
Hiya Maureen. Can I ask why you wouldn’t take the folic acid the night before? As JanieJ is prescribed folic acid 6 days I wouldn’t see any problem boosting what folate will be reduced the day after by MTX. It could well mean that if she has any common side effects will be lessened due to the folic acid taken the night before. After all next week she'll be taking it the day before MTX day. ☺️
Thank you Maureen for your reply, I appreciate your input.
I didn't take the folic acid last night but am feeling quite worried about taking the MTX this evening as it does seem that nausea and sickness is common and it is a particular aversion of mine, that I will do anything to prevent. I also suffer from GAD and have been in a much better place until now and whilst I know that this is minor compared to the many problems others are having to deal with I am considering delaying taking it a week so that I can better prepare myself mentally just in case and maybe discuss it with the specialist nurse and ask more questions.
Do you know if you do get side effects they are reversible if you have to stop taking the MTX?
I understand the apprehension, but it’s not a given. I’ve never had any real side effects from MTX I take 25mg. I took it once in the morning, after delaying due to hubby waiting on test results for covid, and had extreme fatigue, so have returned to taking in the evening. Yes you can stop MTX without tapering, so you could take the one dose decide it’s not for you, and stop. The symptoms would then subside over the week with no long term issues. It often seems everyone gets the side effects, it that’s partly because those with no issues are generally getting on with life and not using these forums. So forums won’t give a true reflection on how many suffer. I’d advise taking it after your main meal in the evening. It may be worth trying the first dose, then you can discuss actual side effects rather than her advising on potential side effects. You have to do what your comfortable with though. I now panic when I’m out on antibiotics and gave to miss a dose. I hope whatever your decision your pains subside. Take care 🤗
If you read the nhs site it tells you that taking folic acid the same day can stop the mtx from working properly. Therefore it stands to reason that if you boost your levels prior to taking mtx when you don’t have low levels you effectively risk it being less effective.
I get that it shouldn’t be taken the same day, I’ve followed that for 13 years, but what JanieJ was asking was should take folic acid the evening before she will take MTX the following evening, so effectively a full day (or night) before not the same day, just as both of us do currently & JanieJ will also do starting the day following her first MTX dose. I hope that's not too convuluted!
I understood, but if you have taken folic acid the day before whilst having normal levels, then you still will have raised levels the next day which will have the same impact as someone who uses folic acid normally accidentally taking it on the day. It is obviously different when we who are taking MTX take it the day before because our levels would have been depleted by the MTX, this doesn’t apply to Janie. You do not want to boost your folic acid prior to taking MTX is my point.
Understood, but my thought process was a slight boost in folic acid/folate level & then taking a folate antagonist the following day would potentially mean that the otherwise depleted folate from MTX would replenished a little & ease the 'hit' of a first MTX dose. Though it's probably inconsequential now given she is starting MTX this evening. Thanks for your input though.
Hi JanieI have been on methotrexate for about 20 years and also different biologic injections as well. I personally wouldn’t take the folic acid the day before and just wait to the day after taking the methotrexate. My sister is also on methotrexate and it was upsetting her stomach and her consultant changed her to injections which helped her stomach greatly. Hopefully you will be able to tolerate the tablets and if your sickness is bad, you can always discuss with your consultant about the injections instead. Hope you find the methotrexate helps you a lot. 😊
Thank you for your message, I appreciate your comments.
I am really hoping that I don't get any sickness at all, as quite frankly I really will do anything to avoid feeling nauseous or sick and if it happens in the first week I don't think I would be able to continue taking them. It has been suggest for me to take them on a Monday and in the evening after a meal so I would sleep off any nausea but my experience has been that if I feel nauseous in the night it wakes me and I would not be able to sleep. I am feeling so anxious about this that I keep thinking of putting off taking them until next week when I can psyche myself up for this. I still have the memory of the last medication I had to take which bloated my stomach so badly and I felt absolutely dreadful all night.
Can I ask if the methotrexate has made a difference to you and your sister and have you had any adverse affects from it? I am also concerned about the warnings from the specialist nurse about not going near people who are ill etc and my GP has told me to stop taking it if I am ill?
Also, do you know if you do get side effects and stop taking it are they reversible?
Hi Janie, I totally understand your worries and anxiety about starting methotrexate, but pls take the advice of your rheumatologist as they must think you need it. My sister and I have had no major side effects, maybe the odd mouth ulcer and sometimes feeling a bit nauseous the next day but honestly nothing bad at all. Can I ask Janie. What dose do you have to take. I take 20mg of methotrexate at times as well as a biologic and it has changed my life for the better. My Mum who wasn’t on any of these treatment had to have both knees and both hips replaced ( she is passed away) but these treatments weren’t available to her many years ago. Hope this reassures you Janie and also when starting methotrexate, your bloods n I’ll be checked regularly. Take care Janie
Hi, I am due to start taking 15mg. My mother (also no longer with us) suffered dreadfully as well with fused joints etc and as you say these treatments were not available to her either.
I think I keep hoping it will go away especially as it was triggered by the flu/covid vaccine and as that wears off, that the ramping up of my immune system will settle but I am told that wont be the case.
Would you mind telling me how and when you take yours? Another member was advised to split hers between breakfast, lunch and evening meal to prevent stomach issues? Was this suggested to your sister? Do you take anything other than folic acid to help with any side effects?
Hi Janine, sorry to hear about your Mum. RA needs to be kept under control to keep the inflammation down and in turn keep from destroying the joints. I take my methotrexate with my porridge one a week as I find this suits me to take it then. The divided dose wasn’t suggested to my sister and she just went straight to injections which had no side effects on stomach. Methotrexate is a great drug to take for RA and helped my sister and I so much, but unfortunately the methotrexate was no longer enough for me and I had to add a biologic. In fact, I’m on my 4th different biologic now as the others stopped working and the one I’m on now is working really well. Definitely don’t hesitate to try the methotrexate Janie as it should help you a lot!
Hi Janie - I too had a sudden diagnosis of RA after my first flu jab and booster vaccine (pfizer). I feel I would not have had the flu jab if I had more information. I took it for the misguided reasoning that I would be helping the NHS not adding to its burden. I was started on Methotrexate in January (15mg) and advised one folic acid. I have since upped my folic acid, but I have had very little nausea from the MTX. In fact only major side effect is tiredness, but as I am only on week seven, I do not know whether it is working yet. I am on oral steroids to tide me into the mTX kicking in. My feeling (hope) is that MTX works for more people than post as they are busy getting on with their lives with nothing to report... Re hairless: I take marine collagen powder daily and have not noticed any hairless due to MTX.
Hi, that's really interesting to hear. Due to having an under active thyroid gland, I was particularly careful which vaccine I had and was much later than most having the first as I was waiting to have Pfizer as I had heard of people having nasty side affects on AZ and every I know who has the same condition felt fine with pfizer but not so those having had AZ.
I was unsure about having the Moderna booster and have been wondering if I would have been ok if I had Pfizer but maybe not, as you had that. So perhaps it is the flu that was the trigger?
I rarely get colds etc and was unsure whether to have the flu vaccine but everyone around me kept pestering me to have it as well as the booster. The first sign of swelling of a joint was the evening of the flu jab but then it really took off the day after the booster which was was given 6 days later.
The consultant gave me a steroid injection at my appointment which he hopes will last 6- 8 weeks and I guess it's hoped by that time the MTX will be starting to work. I'm not keen taking the MTX as I don't like taking any medication if I can help it but my mother had RA although from a very young age and had terrible joint deformities as a result so want to prevent that from happening.
How long does the tiredness last with you? Can I ask when you take the MTX and on what day? It has been suggested I take it on a Monday but wondering if I am going to be wiped out during the week?
I will definitely get some marine collagen just in case as hair thinning is also a side affect of being hypo and would hate to for it to thin any more!
The tiredness is currently one solid day. But it has shifted around a bit. I think two key things are to stay hydrated and be gentle with oneself all around the MTX day. I take the steroids in the morning ( they can interfere with sleep) and now take MTX after lunch on Saturdays as I teach on zoom on Saturday and was suffering brain fog and fatigue too much taking it at breakfast. Also I think def not to drink around taking MTX. Sometimes have a cocktail midweek to unwind I am not a saint!
I did wonder if I could change days if I found that another day would suit me better but this might sound stupid but wasn't sure how to go about that as it seemed like once you started it was carved in stone! I did read that you can take it up to I think it was 48 hours after your usual time but like you the weekend might be better but had initially thought to try Monday to see how I get on. If you take it on a Saturday which day do you have your bloods tested?
I notice that you also have OA in your knees. I was also diagnosed with the same last year after an initial diagnosis of a Bakers Cyst about 4 years ago behind the left knee then the right last year. Sport has been a big part of my life so have been having physio to build up the muscles in the knees. I last saw him the day of the flu jab mid December and am hoping to resume in the next week or so, but what a difference from then until now!
Hi, thanks for your message. I've also been told to take folic acid each day apart from the day I am due to take MXT. Do you take it on the same day as well?
Can I ask the reason why you changed from tablets to an injection?
Hello JanieJ is it tonight you stat on your Methotrexate? Hope it goes OK for you. I take 20mg a week tablet, we're all different in what symptoms we experience or luckily don't, I did feel a bit yuk for the first couple of months, was never ill just felt a bit yuk and very tired. I have always taken folic acid 6 dys a week other than the night I take the Methotrexate, I take it before I go to bed, so I sleep through most of it off. Thankfully now I don't have any symptoms, hopefully you won't have any symptoms.x
Hi, yes I am due to this evening, am wondering if its a bit late now, but haven't as yet as am considering delaying until next Monday to give me time to ask some more questions. I do want to get started on it but its really the sickness that is worrying me as I've spent too many years with digestive issues that are mostly resolved now and really don't want them to start up again. I'm probably being a scaredy cat but as I suffer from general anxiety as well have learnt that sometimes I need to be kind to myself and do things when I am ready.
Thank you for your support I really appreciate it 😊
Hi JanieI was diagnosed with severe RA about 14 years ago and have had a few ups and downs but I have been taking mtx for many years now and folic acid two days a week on days 3 and 4. I can honestly say I have had very little problem with it and the benefits have certainly outweighed any potential problems. I definitely agree with Kitty about not looking for problems. So good luck and hope it works for you.
Thank you so much for your message, it is very helpful. I have since had the opportunity to get some information from my daughter-in-laws sister who was diagnosed a couple of years ago and is also taking the same meds and her input was also helpful.
I didn't start it last night in the end due to some other health issues but am intending to next Monday as this seems to be the suggested day it's taken and hoping for that I will soon be feeling the benefits.
You can take it any day Janie, I think it’s often taken on a Monday as it’s easier to remember methotrexate Monday. If you’re worried about work during the week with possible side effects then I’d take it on a Friday, it might make you less worried ( assuming you don’t work weekends )
Thanks Kitty, I am now planning on starting next Monday as yesterday my GP asked me to check if they needed to know if I've had chicken pox before I start taking the methotrexate and am now waiting for a reply from the rhumy nurse. I'm having a blood test today to determine that so should know before the end of the week. It's hard to be sure which illnesses I had as a child!
I have also asked if there is any chance of having injections instead of tablets to prevent an IBS/gastritis flare up, which is a big concern as well as the nausea, as it can take weeks if not months to settle down again once it's been triggered. So we'll see what they say but am hoping that either way I will be able to start on Monday as I can see the reasoning of choosing that day.
Hi Janie. I was diagnosed with RA 2 years ago. I've had low thyroid for about 13 years. Sulfasalazine worked for me initially, but, after a series of flares, I was prescribed methotrexate in late December. I too had fears about the side effects of methotrexate - I put off taking it until after Christmas so I wouldn't spoil it! But as it turned out, all that happened was I felt a bit "spaced out" the day after. No nausea. The effects were even less after 3 weeks of taking it. I took my 12th dose (15mg) yesterday, just feel a bit tired today.
You'll never know until you try - your worries could be unfounded. And, as others have said, you can always stop if it really doesn't suit you. All the best! x
Yes, I've been on 150mg for years. Can't say the low thyroid causes me any noticable issues since I've been taking the levothyroxine. Before diagnosis I had brain fog, rubbish nails, felt cold all the time - the usual!
I've just been out for a 3 mile walk and feel ok. I hope things go well for you when you start your meds.
Hi Janie, this is my first post although I joined last year. The timing of the onset of my symptoms couldn't have been much worse (April 2020) just as Covid lockdown no. 1 started and my GP was v unhelpful ...I eventually managed to get blood tests and in June 2020, RA diagnosed. This totally shocked me as no family history and onset so sudden! I've never taken any meds on a regular basis, am a keen walker, swim etc. Suddenly I couldn't pick up a cup and even holding a toothbrush was hard, my walking boots didn't fit (same for most shoes).I was started on Hydroxy only but not much change. I went on to MTX 15mg in June 2020 which seems to have got the disease under control. I started with injections then changed to oral. Initially like many I felt just "yuk" for a few weeks but never the fatigue some describe. My folic acid is not taken on the MTX day or day after either - 5 days only. I decided in Feb this year to go back to injections as I was experiencing some bloating and it was v uncomfortable. That could have been unconnected to the meds but i just wanted to stop taking so many pills and give my stomach a break! Everyone is different in terms of how they respond to meds as so many variables but just to (maybe ) offer some reassurance I've felt fine throughout on MTX and my disease is well controlled which is thd most important thing. I have 2-monthly bloods. I'm under the care of a central London hospital which does provide excellent care and staff are very contactable - I know that's not everyone's experience though.... good luck and I'm sure you'll get invaluable support from all the experienced "posters" on this site.
I have a question for the community -
I'm a social worker in adult social care so work with a very vulnerable group of people. I must protect myself.
Do we wait for the text from NHS re Spring booster or book online and take proof of meds? I'm now at six months from my booster.
Like others, I'm finding the information out there is confusing....
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