Methotrexate

I’m going to the rheumy today to be started on methotrexate (but will only be starting it on Tuesday night) and I’m scared ☹️ I’ve done all my research and know it affects people differently but I’m really scared. Anyone got an positive stories for me to try and make me a bit more positive?

73 Replies

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  • Hi I’ve been taking methotrexate for five years now and never had any problems. I’ve just changed to injecting it with a pen which is much easier.

    Good luck

    Trish

  • Is there any reason you switched to injecting? Also how has it helped you? X

  • I’m on 25mg a week and found that with the tablets I had nausea so decided to switch after discussion with my consultant. With injections it bypasses the stomach so no more nausea.

    Trish

  • I’ve been with methotrexate for around 2 years. I get the occasional sleepless night, reduced my alcohol intake and have a blood test for liver function every three months. RA has gone into complete remission.

  • I've been on it 3 years now started off with the tablets but had to change to injections and it has really helped me I also take biologic along with it , only advice I would give is give it at least 12 weeks to give it a chance to work properly and drink plenty of water xxx

  • Thanks honey I will follow your advice. I’ve been on hydroxychloroquine for 2 weeks now and the only side effect I’ve had is lots of dreaming! Hoping i don’t get many side effects from Mtx. Xxx

  • I was on that and sulfazalasine along with the methetrexate but it wasn't helping but I can relate to the dreaming as I used to have some wears dreams when I was on it

  • Injection

  • I thought I was the only one who dreamed but mine were so horrific bad bad nightmare on the hydroroxy I had to stop. Mtx didn't treat me well, I'm on benepali.

  • Hels hon, I'd be more scared of your arthritis going loony if you don't take the Methotrexate! You should be able to report if there are any side effects which are worrying you should you have any on the helpline, or go to your GP and ask them to do so ASAP. You're not sure to have the side effects which are documented or more common place and maybe only a dilute version of them. That's what I found at first. My hair went finer over time so I bought lovely volumising products and my hairdresser cut a lot of choppy layers in. Yes I felt a bit tired after going up to 20/25mgs and I switched to injectable as top dose made my tummy rumble a lot and feel full of air. I didn't feel hungry so I found it better to have the injections. Just keep a note of how you feel. You go up the dose very slowly and get used to it. We will be here on Tuesday if you want to come on and chat about having started your tablets. Good luck .. You can do it! It's one step nearer pain free days and RA under control. xx

  • Thankyou honey 😊 oh god I’d much rather control my condition definitely!!

    Thanks for the tips Hun and no doubt il be here Tuesday or Wednesday haha. If I’m not I’m either too out of it to type or I’m perfectly fine haha xxx

  • I think you'll be fine! 😁 xx

  • Hi Hels. Just to reiterate what I probably said before-apart from the tiredness everyone seems to get for a couple of days I've had no problems with Mtx. Not everyone has problems with it so please don't assume you will. Be positive and only worry about side effects if you get them. Cross that bridge if and when you come to it! You've got people here for if you need em.

    All the best

    Paul

  • Ah thanks Paul your always a great help 😊 I have a holiday to Disneyland to book for with my children next year and just want to get on something that helps! Here’s hoping!! X

  • My pleasure Hels :-)

  • Hi

    Had good experience of Methotrexate for a couple of years then dose increased to 25mg and that's when it started to affect lungs. My advice would be to keep dose as low as clinically necessary.

  • Hi James, Exactly the same thing happened to me, I was fine on 20mg weekly but developed breathing problems [ alarming breathlessness ] when it was increased to 25mg so I stopped taking it for a few weeks [ Took Prednisilone in the mean time ] then went back to 20mg weekly but as injections

  • .

    Some additional Methotrexate (MTX) (positives ➕ ) you may find uplifting/ informative, Hels1989:

    Can I Avoid RA Drugs or Should I Go On Drugs? 'Paddison Program' FAQ Opinion; Also: Methotrexate Explanation & References: healthunlocked.com/nras/pos... (Scroll downward towards videos near bottom of page.)

    Wishing you the very best, Hels1989. 🙏 🍀 🌺 🌞

    .

  • Ahhh thankyou so much I will give a read xxx

  • I was terrified at the start too, I've been on it from July so reasonably recent. I take 20mg on a Friday night right before bed and for the first few weeks I kind of felt like I was hungover on a Saturday morning but sure that's nothing huge! I find now I just have that little bit more fatigue about me over the weekend but weekends are for taking it easy anyway!

    Definitely give it time for ur body to adjust, I always think if I can cope with my pains I can cope with most things!!

    Stay well hydrated, it def helps and if u need a wee nap, have one!!

    Good luck but please don't be scared, the benefits far outway the negatives for me. I'm still working away and running after 2 kids!

    Xxx

  • I have 2 kids and am planning on taking them to Disneyland next year (once in a lifetime for us) and I want to get on steady medication before I book for my own peace of mind so I’m praying I get your story. I work part time and I work Monday, Tuesday and Saturday so my theory is to take it on Tuesday night after work and then I have 3 days to kind of deal with anything. Thanks so much for your positive story it gives me more hope xxx

  • Once I had been on Mtx for a few months I was able to walk up Snowdon! That's how much it worked for me. Wish I could do that now .. Maybe I could but not sure coming down would be good for my knee! xx

  • Good thinking how you are planning to take it just in case you feel a little tired at first. xx

  • I've been on mx since May. By week three all my pain was gone. Never had nausea. I take 15mg week and I split the dose in morning and lunch. I've done it on the day before my weekend just in case but Ive never had issues. Also take folic acid 1mg a day. It works for me so far and recommend. Oh also on prednisone. Good luck. 🍀

  • Thanks Hun hopefully my story is similar!!!! Xx

  • I know it's scarey but everything is reversible so you have nothing to lose but time.

  • Lots! I've been on it 8 years (I think I'm repeating myself here!). Honestly & truly I wouldn't be in the situation I am now without it, confirmed when I had 3 months off it when we returned to the UK from living in Spain where I was diagnosed in 2008. Yes, we all respond as differently as each of us are but with a fair wind & lots of hope for you you'll be fine & call it your best friend too!

    I'm not gonna lie, but you know this already, there can be side effects especially in the early days but the most common ones usually settle as your body gets used to it so don't be disheartened if you feel nauseous, maybe the odd mouth ulcer, a little hair loss & more tired to begin with. The folic acid you'll be co-prescribed are intended to help with those, MTX is a folate antagonist, it's not clever enough to know which cells to work on so as well as the ones that cause inflammation it works the ones needed to replenish good cells.

    Taking MTX in separate doses often helps with side effects & increases it's bioavailability whilst maybe easing them too. From day one I took my initial 15mg in 3 separate doses with meals & had slight hair loss which settled pretty quickly (back to folic acid & good cells) & was more tired the following day. I've been on injections 7 years & have less get up & go & not much appetite the following day, folic acid I take 6 days.

    I hope some of this helps & it becomes your get friend too! Remember we're here to support you through this, so pop on if you get the collywobbles just as you're about to take your first dose. x

  • Oh thankyou so much for your kind words and positive story also!! Just waiting for my perscription now 😁

  • You're welcome! Realised reading others' experience I didn't say why I changed to injections. When going from 15mg to 20mg my liver values rose so it was reduced to 15mg again & started on injections. I've tried twice more to go to 20mg & the same happens but I can tolerate 17.5mg. It does mean I need to be on double therapy but as long as I'm as well controlled as I can be so be it!

  • That’s it Hun as long as it’s controlled that’s the main thing 😊 and I’m glad your doing well xx

  • Same here .. Switched to injecting as 25mgs tablets made me feel nauseous. Now on 15mg and may be reducing again soon. Hoping this works well for you although it did take 8/9 weeks for me before something really happened. Don't lose faith as it's not known to be an overly fast worker for most but once it's started to work you will feel a huge difference I am sure.

  • Thanks neonkittie 😊 hope so! That’s the plan anyway!!

  • Can't wait to see your Disneyland photos! 😁xx

  • Oh neonkittie just getting there will be so so rewarding for me 😊 being able to give my children that experience and this disease not being the focus for once will be so so amazing!!! Thankyou for all your support honey

  • You're welcome and I hope this double therapy is what gets you well and gets you there! I've a strong feeling it will be. xx

  • I hope your strong feeling is correct Hun xxxx

  • I had excellent response to Mtx as my sole med for many years. I never thought I'd be out walking and doing anything active again. I hope you are soon telling us just as Jules is that she's starting to feel less ouch and something good is happening to you! It makes you feel like you can start doing things again and gives you confidence. xxx

  • That would be wonderful Hun because my confidence is getting worse by the day definitely 😕 xxx

  • It will come back as you feel better and get out more. 😘😘

  • I'm on MXT 20mg injections changed from tablets due to side effects. Get them now but continued with it. I've also tried hydroxy, sulphasalazine and more recently lefluomide. Stopped Sulfasalazine hydroxy and lefluomide. Waiting to start biologic. Just waiting for call to deliver and nurse will visit to train how to do injection.

    Hope it goes well for you

  • You couldn't be more scared than me. I started on 15mg MTX a week in January this year and got myself into a proper tweak over it. I took it with my evening meal with plenty of fluid like ginger beer etc. Apart from feeling a little icky and slightly slower the following day I've been fine. The painful joints and fatigue have lessened loads and, touch wood, no flares. My dose has risen to 25mg and the ickiness has been a bit more troublesome so I'll be swopping to sub cutaneous injections at the end of the month. It's been a great med for me and hope it will be for you too. Hugs

    Jan

  • Thanks Hun I hope I have a similar experience and it is nice to me too 🙂 xxx

  • Hi,

    I’m 3 years in and am on 20mg a week with no problems - advice/experiences??

    I initially took my MTX with porridge and fresh ginger to minimalize nausea (I now drop my meds’ into a spoon of plain natural yoghurt and no nausea). You can split the dose to 1/2 with breakfast and 1/2 in the afternoon (split dose must be taken in the same day else it will mess your system up and I recommend doing this). Drink loads of water and some more water. Take your folic acid and if side effects are too much ask for increased folic acid - I was on 5mg once a week but recently went up to 5mg twice a week to see if it would help combat fatigue - it has!

    Get some down time on the day after meds if possible because your system is being ‘stretched’ and this is usually the worse day if you’re going to struggle with side effects. Don’t be afraid of colds etc but take healthy precautions - I teach special needs and have not had any extra colds etc since being on MTX. Get your pneumonia vaccine if you haven’t had it yet and consider the flu vaccine.

    If you haven’t already had it ask to have your vitamin D levels checked as low VitD is common.

    All the best

    Ali

  • Thanks for that Ali il defo follow all of your advice 🙂 x

  • I started Metrotrexate in Feb of this year 25 mg a week with folic acid a day later. I'm also on Plaquenil. It took it 26 weeks before it started to really help. Every bit of the side effects was worth it as it has improved my quality of life. I can now walk and hour a day. I am now side effect free but I always drink 1.5 litres of water on Tue right after taking the pills. Good luck I hope it helps you as much as it helped me.

  • I was one of the first to go on MTX when I was about 16-18 in 1980/82. It's been the best drug for me. I've taken it for about 38 years now. No internet when I was 16 so didn't google and didn't worry about it. Keep things in perspective, the majority of people tolerate it and are absolutely fine, hopefully you will be too. Good luck.

  • Oh fabulous 🙂

  • hello I have taken Methotrexate since February never had an issue no side effects other than a little bit of fatigue, I am moving on to benepali next week only because they think I'll get better results from a biological but other than that no problems at all ...

  • Oh fabulous thankyou 🙂

  • When I started my Methotrexate I was on the tablets, then I moved over to the injections once a week they're really easy to do ..

  • Try the pen injection as you will need less by injection than tablet as tankers lose some potency

    Ensure you have blood tests every month as it can damage your liver

    Good stuff but like all meds do what you are told , nothing to worry about

    Are you on hydox and sulfas as well 😊

  • I’m on hydroxychloroquine but not sulfas. I’m starting on 2 weekly bloods at first.

    Thanks for the tips 😊

  • I have found injection is best as it doesn’t affect my tummy so much as tablets. I personally find that an injection taken later on in the day is more beneficial as earlier on in the day I tend to be rather lethargic.

  • I totally agree with you I used to take it on a Monday morning and I was exhausted by Monday afternoon, so now I take it Monday night after tea and I have some fatigue on Tuesday and little bit on Wednesday but then I pick up.

  • Hi there, I'm about to start mtx by injection next Tuesday (21/10). I am scared stiff. Does anyone on here have psoratic arthiritus? I have swollen fingers and toes at the moment. I too have children, 2 & 3 year olds, I'm scared I'm not gonna be fit for them!

  • I’m sero negative with many symptoms of psoriatic arthritis (psoriasis and nail pitting) but no swollen fingers or toes so they arnt sure 100%. I have a 6 and 4 year old and am a single mum and also worry about the same. I start Mtx by tablet form next Tuesday also. Maybe we can keep in contact about our journey with it xx

  • Hi Hels, it is scary isn't it. Especially if your like me and read everything possible about the drug before I start taking it. But I can give you a bit of positivity! Been on it for eight weeks, with no side effects at all. Am cutting down the steroids now which is causing more pain, but with each reduction, the pain comes for a few days and then levels off. My experience so far with methotroxate has been a good one, I'm sure you will be fine too. Chris

  • Thanks Chris!!! I hope if carries on been positive for you and for me too x

  • I hope so too! Let me know how you get on x

  • Hiya I've only been on it 3 months but made me nausous/headache. However recently switched to injections, don't ever worry about this , you literally dont even feel them, pen does it all for you and they show you how to do it. Less nausea with them and they've just jiggied dose for me. Everyones different and i was scared bout taking it first time but they can adjust dosage and amount of folic acid etc. 3 months in i've just gone from 20mg mtx oral to 12.5 metoject plus hydroxychloroquine like you. Definite joint pain improvement, less fatigue and getting on top of side effects now. Wish you all the best. One thing: drink loads of water with it x early days, it takes time to work.

  • Thankyou very much for your response 😊 glad it’s working well for you Hun xxx

  • I've only been on methotrexate for about 3 months and I've had some relief, but but not significant or total relief yet. However, I'm going to keep going and see how the next couple of months go. With that being said, the first couple of weeks were kind of rough, but then the side effects got better. I should say, I found some things that have helped. I eat oatmeal, or something soothing & bland, that will stick with me as the meal that I take my meds with. I also sip ginger ale that evening & the next day. Those two things pretty much take care of a dodgy belly. Initially, I lost a little more hair than normal, but back to a normal amount now. I plan to have a low key day, the day after taking methotrexate, because I can never really be sure exactly how I'll feel and I want to be able to have the flexibility to take a nap or just not be stressed. However, I haven't had to cancel anything since week 2. I feel like my body is adapting well.

    While the pain isn't completely gone and still interferes with my activities, the number of significant flare ups is down. So I'm going to take that as some success.

    I've also done some research when they tell you that you are at increased risk for certain cancers, etc. I had the testing done to make sure that I didn't carry a couple of those genes, just to make sure that I wasn't piling one risk on top of another. It makes me feel better that I'm not. I've also read some information that says that the increased risk for an otherwise healthy person is only about 1-2% more than the average population for some of the cancers. That also made me feel better. A person's risk could be higher for so many reasons, like environmental factors, genetics, etc. My take on that is that I'm fine having a slightly higher risk when the trade off is significantly better quality of life overall.

    Try it out, make sure to do the scheduled testing every couple of months, try to work with the drug so that you can tolerate it, and remember you can stop if it's not the right medication for you.

  • Well I’m going to be taking mine on a Tuesday with my evening meal but I work till 8 so always have something small. So I was thinking porridge and then some ginger biccies 😉 I guess it will just be trial and error at first. Also I decided to take it on a Tuesday as a work part time and am off weds thurs and Friday after that and only have the school runs. Although my rheumy has booked me in for my bloods on a weds morning at 11 for 2 week slots after I start 😩 so I’m praying I don’t get too much nausea!!

    Also I try not to think about cancer too much. My mum had psoriatic arthritis and she died at age 39 of a VERY rare form of cancer which is a little scary but I think these days they say everything causes cancer. It does scare me but I just try my hardest not to think about it too much.

    Thanks so much for your story honey xxx

  • You're welcome. I started out taking it on Thursday night before bed, but then I realized that I don't feel any side effects for about 4-6 hours after taking it. I figured why waste my "feel good" time sleeping, so I moved taking it up to around 2pm. That way I don't start to feel extra tired until around bedtime and I end up sleeping really good, because of being extra tired. Only drawback is that I oversleep (compared to usual) on Fridays. If I let myself just sleep, everything is good. If I have to wake myself up before my body is ready, it's a little rough, in that sort of startled, I didn't get enough sleep, kind of way. Definitely not the end of the world, but not my preferred way to feel right away in the morning.

    I'm sorry to hear about your Mom. Try not to think that you will have a similar outcome. While they say everything causes cancer these days, they also have a lot more success rates in putting it into remission or curing it. I try to think about that side of it.

    Take care.

  • Thanks honey, it’s not easy losing your mum at 17 but my god she was an inspiration. But I keep thinking how horrible is it that she went through all of this with inflammatory arthritis and in the end she ended up with an aggressive terminal cancer! It’s like how can anyone be that unlucky!!!!

    I’m glad it’s been quite kind to you lovely and thankyou for your kind words and support

    Xxx

  • Hi' Yes there are side effects with Methotrexate but they're rare and if you think about it all medications can have side effects even the couple of painkillers you took for your headache but they never have I bet so don't worry about it, The best suggestion I can make is ask if you can have the injections instead of tablets because it'll bypass your stomach and prevent bloating and possible feelings of nausea and keep your eye on the dosage strength, I wouldn't take more than 20mg weekly, If by any chance you do experience side effects report it to your Rheumatologist right away and don't be fobbed off by things like...Oh it'll settle down in time, But i'm sure you'll be fine so don't be scared

  • Hi, i have been on Methotrexate for approx a year now 20mg weekly + folic acid. I had ups and downs in the beginning and was taken off for a couple of weeks due to raised liver readings. Took a while to kick in but now i can exercise which also really helps to keep joints supple. I was put on hydroxychloquine recently too in twice daily doses , i get very tired the day after taking methotrexate and slightly nauseous but I'm prepared to put up with that rather than the excruciating pain i was in. I'm now on 3 monthly blood tests and a yearly consultant appointment.

    I too was very reluctant to start taking this drug but sometimes i fear we only hear the horror stories and should at least try for ourselves. My consultant informed me that this medication not only alleviates the pain it also stops any further damage to joints so thats a bonus in its self.

    Go ahead and give it a go what have you got to lose?? Don't expect overnight miracles it takes time to get into your system but hopefully in a couple of months you will feel like a new person. Good luck on your journey i hope it works for you and you get some relief soon.xx

  • Hi Helen Has your day arrived yet? I started 3wks ago and its so much to think about They tell you it will reduce inflammation and I was desperate for that but the niggles are Will I lose hair? How sickly will I be? What if it doesn't work? Then actually taking 6 strong tablets. My RA is bringing me down one ok day 4 awful. The pre-tests keep you busy blood check Lung tests. I took mine at bedtime and I swear Saturday I felt tiny bit better ok during the week some indigestion Second week the same My expectations and anxiety was awful and this w/e my stomach has been troublesome but I've also got bile ducts blocked so my stomach is delicate I'm seeing gastro in Jan so my head is saying I'm definitely ok and hopeful some inflammation has settled and it takes 3 months so who knows by then. I get a headache day 2. I read here someone said drink loads of water don't ignore that Drink water every hour the few days you take it. Been reading it needs absorption through kidneys. Worst case scenario when I see my Rheumy I will ask for injections Eat well light food but healthy to help your stomach and drink gallons My hair is fine bought some nioxin boost just to use on dry hair through the week. If that's a concern. Try to do as much housework before your dose so you can totally relax I notice your kids are young so I hope you have support I'm 59 mine are grown up. Best of luck don't worry just keep in mind if its hard you can switch to inject I read its the best effective txt. Lots of Love you can do it!! Eat small but healthy and drink!## xxxx

  • Hiya Hun thanks for your message! No my day is tomorrow night and yep all the same questions for me!!! Trouble is I suffer with bad anxiety so when I’m not worrying about how sick and tired it will make me I’m then thinking to myself “if I don’t get any symptoms maybe that’s a sign that it won’t work for me!” Haha I’m my own worst enemy!!!

    Yeah I think everyone at some point needs to drink more water and I know I do so I guess it’s something that’s gonna make me do that!!

    Thanks again for your lovely message and il post another post in a couple days with an update! Hopefully it’s a positive one!!

    Xxx

  • Take a look at these helpful videos nras.org.uk/using-methotrex... and a new animated one will be up on the site before the end of the week.

    Hope they may help you feel better about taking this medication which for the majority of people works incredibly well at keeping their RA under control. RA is a complex disease and treatment is not a one size fits all but hopefully MTX will do the trick for you but if it doesn't there are many other treatments in the pathway that are detailed in the NRAS medications booklet. If you'd like a free copy just call 0845 458 3969 or email enquiries@nras.org.uk with your name and address and we'll pop one out in the post asap.

    Best of luck

    Clare

  • The videos definitely have given me hope. Thankyou 😊 xxx

  • Clare I just watched those videos and even though Ive had the "educating talks" there are really good. Positive but honest. Thank you.

  • I've been on 20mgs of Methotrexate weekly, and 200mg Hydroxychloroquine daily for 9 years now, and for most of that time, I have been symptom free, with NO side effects. Don't be scared - start the Methotrexate with a positive attitude, and, hopefully, you'll get a good result. Good luck!

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