So I have the tablets in my hot little hand. Yesterday I had a perfectly awful day with what I think must have been my first proper flare (thought I've had it before but that was child's play in comparison). Everything hurt including a lot of pain in my upper back which has tender and painful vertebra and also my lower back, SI area and inside bum cheeks. Also my heels and ankles and lots besides. Anyway it made me feel really fluey too and although I had a good night's sleep I still have a fair amount of pain this morning.
In other words I am more than ready to start mtx. I read some people saying it knocks them out and so they choose a day when it's more manageable. Also, should it be with food? all it says in the leaflet is to sit upright. Also, when I googled it the NHS advice says:
20 Mar 2020 - Taking methotrexate tablets You can take your tablets before or after food. Wash your hands after touching the tablets.
WHY?? What is this stuff Novichok??
Written by
Brychni
To view profiles and participate in discussions please or .
I wasn't aware of needing to wash your hands and I don't think that the rheumy nurse mentioned it but we're used to doing it anyway these days, aren't we?! 😂 I don't think that I read the leaflet tbh, just listened to what the nurse told me.
I used to take mine after tea; I found that for me (and as we know, everyone is different) the woolly head came on about 24 hours after taking them so I moved my day to Saturday as Sunday was usually a free day (I'm self employed so my work hours vary.) I found that the side effects went after a couple of weeks on each new dose anyway.
Whenever you decide to take it, stay well hydrated on that day and the following day as that helps.
Try to be as optimistic as you can about taking it - so many people have no issues with it at all but you're unlikely to hear from them as we naturally ask for support when we've got problems, that's just human nature 🙄😊
You should just carry on your life drinking & eating as normal......obviously keep well hydrated.,..but take the pills & forget them......get on with your life without getting your stomach in a knot about something that will 99% not happen......
Thousands of people world wide take Mtx very successfully....It’s not fair to perpetuate the idea that people will always get side effects...because if they did...Mtx would have been discarded years ago.
I agree with you. I have taken MTX for many yrs. If I had any side effects. I wasn't that concerned. I take 4 -2.5 tabs a week. I guess I just take it in stride. I'm just happy when something works! Don't want more pain than I have.
That is the best advice to give. Ask your doctor. I don't want to imagine the side effects will happen. I wait and see. If I need to I will address it.
When I first started on tablets way back my nurse frightened the life out of me. She told me not to touch the tablets (how was I supposed to get them in my mouth?), wash them down quickly with lots of water, take them when standing up and remain standing for 30 minutes! At that point I could hardly stand for 3 minutes let alone 30!
There is a touch of sense it it as you want to get them past your mucus membranes as quick as you can. But I found sitting in bed with a glass of water and a book was just fine. So dinner, early to bed, cosy read until tuck myself up and sleep through any side effects.
Did you ever find out why the hand washing? I took the tablets 2 hours ago and forgot to wash my hands. I'm in a cafe now probably contaminating everything 🤣🤣
That's such a coincidence! I have literally just started to delve into Givenchy and have been reading about L'Interdit. Received an old, unopened bottle of parfum Givenchy III - divine. Smells like a slightly more feminine Cabochard... Oh God, you've got me started now!
you need to get yourself on eBay and look for vintage. Then you will soon discover that you're not sure what a vintage bottle looks like...then you'll find yourself googling how to identify vintage bottles of perfume...then you'll be subscribing to all sorts of perfume websites and analysing markings, batch codes, reformulation information until you can hardly see any more. Welcome to my world!
Sadly, I’m old enough to remember what you regard as vintage bottles looked like!
In fact manufacturers often repeat a style....encouraging innocents to think they are buying the original....but apart from the headache inducing Chanel No 5,& Joy...I can’t think of a perfume still in the same style bottle.
Have you tried Mitsouko or Fidji yet...they were favourites back in the 1970’s?
Oh yes! I went through the Mitsouko phase just before lockdown. I have a small fairly old parfum bottle, but I didn't go any further because it is really, really expensive.
Many thanks for the info! Grown up indeed! I'm not fond of what I think of as 'bubblegum' scents marketed at the youth market said she while frantically searching for Perfumes Direct...
You've just taken me back K. Je Reviens was one of the first 'grown up' perfumes bought for me by my Dad. He gifted me a different perfume each year but the one I received Christmas Day 1983, the day he proposed, my h had an allergic reaction to, hay fever-type symptoms. Not worn Blue Grass since.
Blue Grass had me spluttering too...as did/does any sort of Sherry...in the days when we were oh so genteel & had Sherry as a pre dinner drink...a friend’s father would bring in the drinks.....with a packet of tissues for me!
Do you use the Fragrantica.com site Brychni? I have used it before as I also like some perfumes which are no longer produced & checked those I know. It's a good resource for things like the perfumer, you can search by designer/fragrance notes, the accords or blends, awards, by year, where available & price etc. There's a forum as well.
Hi nomoreheels - Fragrantica!! when I am going through a phase I am on it at least twice a day 😏. Every so often I disappear down another 'house' rabbit hole. This may surprise you but purely out of curiosity and on the 5 star recommendation in the Luca Turin and Tania Sanchez book, along with Givenchy, I am also discovering Angel. I used to see it in department stores and think 'Yuk'! even the bottle looked vile. But I received a vintage sample the other day, put a bit on and left it alone, stopped thinking about it and it really is an interesting smell. So many layers. It starts off all chocolate and something bitter, then patchouli (refined, not hippy oil!) with a just a hint of mint in there then dries down to an interesting musk which is a bit masculine. I love the history of perfume, the ingredients, the stories behind them and how they work the imagination. smell is apparently the most complex and important of all the senses.
Sometimes, when I smell Diorella I am almost literally transported back to my childhood.xx
I think our change tastes as we grow you know. A close friend used to wear Gianni Versace & I wasn't too keen but she wore it last year at her daughter's wedding & I thought it was lovely. It's retired now but I wouldn’t mind trying it for myself if I happen upon a sample size before I commit because as you'll know what can smell lovely on someone else can be quite different on yourself.
I've been taking MTX (amongst other things), since about 1990 when I was 21, so that's 30 years now.
I have never been told to wash hands before & after or stand up or anything like that.
Initially I use to take the tablets spread throughout the day, but that did make me feel a bit nauseous. Now, for more years than I can remember I've taken them on a Friday night at bedtime all in one go. This worked better for me. Occasionally I feel a bit nauseous the following day, but most weeks nothing, and a lot of the time I forget I've even taken them! I've never had any real side effects (apart from increased rheumatoid nodules which not everyone gets anyway, and this was remedied by reducing the dose a little). I've never had to stop it for any period of time either.
So agree..I took 10 tablets a week...often a few were on the bedroom floor when they missed my hand/mouth...& I’m still her to confirm touching /dropping Mtx does no harm at all!
Yes, nodules are strange things aren't they? I've got them on fingers, feet/toes and 1 elbow. With higher dose MTX they went a bit wild - it was like giving them fertiliser!😁 My consultant said very occasionally MTX can increase them so it was reduced a little. Like you though, once I started Humira as well about 11 years ago they went into a bit of a retreat! I've still got a number on my hands, but they are generally a bit smaller nowadays. I also take Prednisolone, Cyclosporin and Hydroxychloroquine.
I also had them on my fingers. Under one of my big toes and on one side of my nostril really weird. You couldn't see it. But it was sensitive. They are all gone now. Strange
Very strange! I had some of the one's on my feet removed surgically, a couple of the biggest ones on my fingers injected with steroid as an experiment (ouch), and the rest have been left well alone! Inside the nostril? Wow - that's a good one! I can well imagine it was very sensitive!😳
Sorry it's come to this. Nothing like a good kicking to get you started eh? Well, I inject so first thing straight after my shower but with tablets my Consultant suggested taking them with meals so I took my 15mg as 2 with breakfast, 2 with lunch & 2 with my evening meal. You're upright anyway when eating so that was sorted too. It worked well for me, I had some nausea when I first started them but within a few weeks that went. It does come again when my dose is upped but it eases the longer I’m on that dose, it's just my body getting used to the increase.
I never touch any of the tablets I take, I push them out of their blister cell into a pot, actually a liquid med dose pot given to me by my GP. Unless your MTX tablets are bottled that might get over the problem of handling them?
They're not to those who need them & at the correct dose for you taken properly, not sure why I gave that idea. You can take your dose in one go, it was my preference to take them throughout the day with meals.
I started on tablets for the first year then switched to injections when I had my first increase in dose. I've been injecting 10 years.
Should have mentioned the increase from 15mg tablets to 20mg injection was too high so went back down to 15mg. This was when prefilled syringes were used, before pens were available.
I don’t know where this idea has come from ...I took Mtx for seven years 2009 to 2016...I just tipped them into my hand put them into my mouth swallowed them and forgot them!
If there was ever any mention of any problem with handing them ....it would be written all over the packaging..... exactly as it is on Biophosphonates that you must stand up for half an hour after you’ve taken them!
So take them as you will & enjoy the relief the drugs bring!
I used to take it after tea on Friday evening, with a glass full of water. It made me very tired for 48 hours, and queasy, so peppermint and mint tea became my friends! Hope you get on well with it and it gives you some much needed relief. Try not to plan to be really busy the day after if it makes you tired.
Love peppermint tea, or brewed with mint fresh from the garden. We have a mug after lunch & our evening meal. Helps aid digestion & is anti inflammatory too.
When I started on it my rheumy nurse said "methotrexate on Monday, folic acid on Friday" as it's easy to remember M&F, but then I had to increase the folic acid to 5 days a week (due to side effects) so that confused things! I tried taking the tablets at all different times, before food, after food, splitting the dose etc. but just couldn't tolerate it (I gave it a good 6 month try) alas it wasn't for me but it is for many many people, so I hope it is for you! Good luck!
yeah - I live in a permanent state of confusion anyway - already this morning I was planning lunch around mtx and then remembered it's only once a week - duhh!
Just to add to all the advice and experience from others, my understanding is that MTX is cytotoxic, which means it can damage your skin. That's why we should avoid touching the tablets and wash hands if we do. I'm using injections now but started with tablets which I peeled straight from the foil strip into a small cup.
Good luck. Hope the flare subsides very soon. MTX takes several weeks to kick in so you may need short term steroids to help in the meantime. If you are in severe pain maybe you should be contacting your Rheumy for support.
Well after 7 years on Mtx ....holding them in my hand every week....my skin is just the same as before.....older of course .....but I don’t scare horses in the street. If a high dose was going to damage skin I think I might have noticed!
In fact Mtx is used to treat some forms of psoriasis. It’s probably all in the dose....when used as cancer therapy it is used in much higher doses ....so maybe then it might cause skin issues?
OMG! I just ordered it on Ebay. I love fragrances. I also ordered arpege. The tester wasn't expensive. I have to see of they don't make me sick. especially when I'm in the car. I have motion sickness. If it works for me my sister will buy it because she has allergies. Lol Just what I needed somewhere elce to induce me to buy stuff. Lol! I can't resist. Sometimes! The right fragrance makes you feel good.
Bellodgia (it’s by Caron - not Carven as I think I said before) .....smelled divine on other people....but I found when I used it myself I was always nauseous....& Chanel No 5 gave me a terrible headache.
Hi DenMum, yes I have had 2 really bad days, first time. As I said before I thought I had bad days over the past few months but nothing like the past 2 days. this time I wasn't really able to just 'carry on'. I spent a lot of the day on the sofa and walking was difficult.
I feel a lot better today, but that's because it always is on and off with me but the 'ons' are getting nastier and closer together. The nurse is sending a prescription for Prednisolone (?), she said they can be a stand by if things get bad while waiting for mtx to start working, which, she warned wouldn't be straight away. Interestingly she didn't advise Naproxen - she didn't say not to take it but said nurofen etc would be all right.
Mtx can take anything from 12 weeks to start working....so don’t expect miracles...sounds as if you have a sensible rheumy nurse.....trust her! not the horror stories ...fingers crossed for you.
Keep yourself occupied don’t keep thinking “when will it work” 24/7!
Hi Brychni I’ve been on methotrexate along with my biologicals for over a year, with no side effects. I take my methotrexate first thing on a Monday morning with pure orange juice and try not to worry about taking them, they cause me no issues at all, which I know is very lucky as so many of u guys hv negative side effects
Surely it's got nothing to do with MTX, we are told not to put our hands to our mouth because of the Covid 19, it can only be just a precautionary measure wash your hands before handling anything you put into your mouth.
I googled it! It's because they are so potent. Apparently even the dust from a tablet can get into other people's bodies somehow and cause problems - the main one I read about was it being dangerous for pregnant women and fertility. Yikes
I've been taking MTX tablets for 20 years and have never been told anything like that, there isn't anything on the paperwork that comes with the tablets about that, and the NHS is in danger of receiving a massive law suit if they've failed to inform patients of the danger from these tablets, not everything that you read on Google is correct, sounds like fake news to me, I'm not having a go at you it's nothing personal I'm just expressing my thoughts.
It does say that agreed, but as someone who's been taking MTX for 20 years I find it absurd, and no one else on here seems to be aware of this, MTX helps thousands of people with different diseases , thousands of RA sufferers rely on MTX but on here people mainly want to find fault with it, and people who are easily frightened are put off ever giving it a try, if a person of a nervous nature reads all the paperwork on side effects they wouldn't take anything, with the blame culture we live in "where there's blame there's a claim" I can't imagine any Pharmaceuticals company would knowingly put a patient at risk, and then be taken to court for millions of pounds, to me sorry for the pun but the advice doesn't hold water.
When i was on methotrexate i had no problems at all, with time of day taking them or , with or without food . They worked brilliantly and i felt nothing ,(in way of side effects) after taking them. It was just the hassle of trying to get 10 little tablets out of the blister pack without dropping them lol. Everones different but hopefully youll have the ease i had with them xx
Hope you having taken your tablets by now, you look to have some good tips. When I started mine a number of years ago the dose prescribed was too high, once adjusted I was fine. Don't worry if at the beginning there are some side affects because they will get sorted and you will settle.
I have always taken mine before bed. I think that if it is going to make you feel a bit sickly you will sleep through that. Don't forget to take your folic acid the following morning.
Hi I take mine about an hour before my tea on a Friday. I drink loads of water today and have a salad or something light. Also drink loads of water tomorrow to. I also listened to what my nurse said and can’t remember reading booklet but I might have done. It was over 4yrs ago. I have a Netflix day tomorrow Just veg out. I do get a good sleep 😴
I've been on MTX for a year, and although it took its time (steroids bridged the 3 month gap) my RA is now well controlled. I'm on 20mg.
I was advised to have a good meal on mtx day and then take the tabs. So it's a good evening meal, then I take the MTX before bedtime and get my head down.
I give myself no expectations the next day and warn people (not that we're seeing many in these strange times) not to expect anything involving brain power from me that day. Sometimes I surprise myself at what I achieve by not having any expectations or putting myself under pressure. Other times I'm a bit foggy. Any nausea (doesn't happen much) is dispelled by toast or plain biscuits
And that's about it...
I hope it continues to work!!!
And I hope it works for you, and you're soon out if your flare.
Thank you Brychni and everyone else. This has really helped me. I am due my pre-methotrexate counselling phone call (wasnt expecting that!!) on Monday but this thread has helped already.
One thing I'd like to ask, anyone who has started the drug recently is, did you consider postponing until after the covid situation becomes less of a crisis. I'm taking Prednisolone already (which has helped the symptoms somewhat) and will take Metx along side it for a while so that will put me in group 3 for risk. As a sixth form teacher (working p/t) I am wondering if I should take on the increased risk. I will discuss it during the call on Monday but since you all have been so insightful thought I'd ask. Thanks in advance. C7
I think that the current advice is that uncontrolled disease is a bigger risk factor than medication which is why people were advised not to stop their medication.
Good that you'll be able to ask during the phone call (it's probably to give you the same info as I has during the f2f nurse appointment last year) but if you'd like more feedback from folk on here, it's probably worth starting a new thread as your question may well get missed 😉
You need the MTX to control the RA, which could do you a lot of harm if uncontrolled. The Pred is putting you at much greater risk from covid than the MTX will. As the MTX starts to work, you will most likely be told to start tapering the Pred. Taking MTX and slowly getting off the Pred will almost certainly be a very good thing for you. You will be able to confirm all this with the experts when you have your phone call. I hope all goes well.
I'm not new to MTX (11 years) & obviously I can't predict but I would think you'll take from your tel conv on Monday that they expect you‘ll start MTX, I don't think they'd have booked a counselling call otherwise. It's good you have the opportunity to explain your work situation though, just to be sure you have the correct advice for you. Generally though what we have been advised is that unless we hear to the contrary from our Rheumy continue meds as usual, taking the correct precautions. I'm also on corticosteroids. This is info from NRAS
Should I stop taking my RA medications? NO It is vitally important to keep your RA as well controlled as possible. If you come off your medication(s) you have a very high likelihood of going into RA Flare. Due to the massive impact of this virus on the health service you would more than likely be unable to get to see your GP or rheumatology team for any sort of speedy intervention. You may be advised to pause your medications if you are showing symptoms of COVID19 but you should seek proper medical advice from speaking to 111 and ideally your rheumatology team. nras.org.uk/frequently-aske...
Hi , yes I did consider postponing because of the virus, but I was also told that the disease itself will make a patient more susceptible and ultimately less able to fight it. So I interpreted that as being doubly susceptible since it takes ages for mtx to work.
What finally convinced me was the sheer agony I was in for most of Wednesday and Thursday. I've been lucky so far with only intermittent episodes but this seemed like a taste of things to come.
So far I have had no side effects whatsoever. No nausea, no tiredness no fuzzy head. My spine in upper back however, continues to burn and I had a really nasty bout of that again last night. It's in my upper back and I don't think it's for rheumatology, although they know about it. So I am going to call GP later on.
Obviously there are no guarantees about how it will affect an individual, but with me, so far so good.
I know that a lot of people in the forum are further on with their disease and that exercise is difficult but I do believe that exercise helps to process the worst of these medications. I only do what I can, but I do it, religiously even when I don't want to and I'm convinced that helps. It also boosts immune system so it can only be a good thing.xx Hope it works for you.
Forgot to say: my husband is a teacher, we have 11yr old and 15 yr old back at school in other words a haven for all sorts of germs! Not sure that I can avoid it all.
Hi Brychni-I've been taking Metho for years & never been told to wash my hands after handling them!? I also always took all 3 tablets in the morning with my breakfast. Recently I had a bad upset tum & read that spreading the dose through the day helped. So I took 1 tablet with bfast & other 2 with dinner. Having a conversation with my Rheumy nurse recently I told her this & she went into an absolute hissy fit with me & said that governing body 'Nice license states that all 3 tablets should be taken on an empty stomach at 10pm at night!! Well that wouldnt help my upset tum I'm afraid!! I have never been told thats when & how to take them in the 34 years I've had RA! Has anyone else heard same?? Hope you get on ok with them by the way & you're flare ups improve.
No! In fact when I started taking tablets my Consultant recommended I took them with meals through the day (equally divided dose with 3 meals), this way I was less likely to have tum side effects, or if I did they'd be less severe. I've never been told to take them as you've been instructed so specifically. I've searched NICE & elsewhere & again there's nothing so specific, only that you can take them before or after food. If it was me I’d be tempted to ask your Rheumy him/herself if the info given to you by the nurse is correct, & name the nurse if you know his/her name.
Started with MXT after my RA diagnosis 20+ years ago, going off intermittently due to remission or low blood counts. It has always been my therapy of choice and doesn’t have the serious side effects of newer biologics or JFK inhibitors. Everyone reacts differently but I would suggest taking it on a weekend day after breakfast; not taking Folic Acid on that day and just following your regular routine. You might feel a little nauseous (as I did this time around) but it’s mild & manageable. That’s the only side effect I experienced. It also takes a while to kick in so if you’re in extreme pain ask your Dr if you can take a NSAID like Naproxen or Diclofenac , but go easy on these. I hope you do well and wish you the best!
thank you Jollyjill - so far I am feeling OK. I did feel a bit sick during the night but actually that's not unusual for me - it just felt like a different kind of nausea, if you know what I mean?!! 😂 I think I may already have over done it with the Naproxen and have been trying to lay off. I took one the other night without the Lansoperazole and it burned so much I felt it in my back, lesson learnt.
Hi, I found that taking the tablets on a full belly helped me. When I did feel sick I would keep eating little through out the day or even snacks, for some reason that helped me.
Also, keeping yourself busy to distract from any side effects does help. Hopefully you don’t experience any and can tolerate the medication which a lot of people can. Stay positive!
All the best.
I take mine straight after my evening meal. I've been on doses up to 25 mg and never experienced side-effects. My ALT levels climbed dramatically early this year (no symptoms that I could detect) and I was taken off MTX for 3 weeks until the ALT settled, then restarted on 10 mg. All good so far.
It's a black listed medicine meaning there are a lot of negative possibilities with this and almost all medications dealing with arthritis it seems. Flu like symptoms are a side effect. It takes about 3 months to fully be effective. I had to change to Arava. It is a good alternative if MtX does not work well for you.
I used to do my injection on a Friday night before watching a film and off to bed ... then I’d have plenty of time to rest the next day. Once I got a dodgy pen and it kind of exploded all over me and my couch and I couldn’t get the stains off with anything . I thought it was no big deal till time came to get rid of the syringes as the sharps bin was full.... honestly what a carry on ! None of the departments wanted to handle them ... GP , council toxic waste, hospital ! I guess the ingredients are quite serious after all. I wouldn’t worry too much tho as my cushions are still in tact and no damage done to my skin at all. Just be REALLY careful not to take the pills daily by accident as this can be a serious overdose . Put a big sticker on the pack saying “ only on Friday!!!!”
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
What a difference a day makes...............................
Waiting for biologicals to kick in!
Tough time on methotrexate
sulfasalazine & wrong med issued - Another update
Decisions Decisions, In a quandary as to what to do next
