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Methotrexate 😡

Hi, I know this question seems to one of the first with the illness and this treatment but...

sickness. I am 23 years old and been diagnosed with RA since July with a history of 3 years and now I’m on methotrexate. I was on 15mg of pills to start with then went on to 15mg of injections upped to 20 and now upped again to 25 because rhumy can’t get my knees under control. Now the sickness with the injections is horrendous!! I am feeling and being sick for 2 or 3 days after my injection. I am dreading my injection so much now that it puts me off taking it. The high the does the more sick I feel and I’ve had enough. I’ve tried all the ‘remedies’ you can think of, not only is the methotrexate disagreeing with me, but I have new active arthritis is a different joint now. Which the physio said shouldn’t really happen with the high does. I am really really tired of this disease and literally don’t know what to do anymore and feel completely like giving up on my injections but I’m still in absolutely agony with my knees! Can someone please tell me something different to do or help in any sort of way?! X

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Hi Abbie, of course we can help. Just hang in there because there are many members who can perhaps suggest more to you than I can as many are also on methotrexate injections. I was prescribed MTX at the start of my disease but in tablet form. What a shock for you at such a young age. I'm so sorry! Are you taking folic acid too? My suggestion would be to see your GP and if you can't get a Rheumy appointment for a while, your GP can telephone and speak to the Rheumy about your sickness with the drug. Others will reply to you, we will see what they suggest. Love and hugs. I know this is very tough. Xx

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Hi Shalf!

Thank you so much for replying! I’ve always wanted to write on here for some advice but always been a little scared. I’m not on folic acid unfortunately due to not being able to swallow tablets. I had a very very bad start with MTX tablets and now I can’t take any tablets at all! So coping on my injections and codeine in liquid form! I’m in no anti inflammatory which I think is the cause of my badly imflammed knees and thumb! I’ve had my knee drained and objected eith steroids 3 times this year and nothing seems to be controlling them! My GP is absolutely shocking and always tells me to ring my consultant and my consultant tells me they nothing she can really do because I struggle with tablets. My life has been flipped around and screeched to halt since my diagnosis. Definitely taken my previous life for granted!

I am very thankful you have replied it is nice to speak to someone who knows what this life is like!❤️ Xx

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I feel for you I really do! Your GP and Rheumy don't sound very helpful. Re knowing what it's like, yes we have all experienced that feeling Abbie. That's why this forum is so good because we do understand. I am glad you plucked up the courage to post, I know there are people who are scared, but the vast majority of us are very gentle and caring on here. Your in good hands sweetheart. I'm going to seek advice for you Abbie for now and tomorrow you can also speak to NRAS on their helpline too. Bear with us. Xxx

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My GP and Rhumy are really bad! I normally get told my swell count is down when my rhumy hasn’t even examined me and couldn’t really know for sure! Thank you so much for your help and I think I will give them a call tomorrow! Thank you again!cxx

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Can’t pills be crushed or dissolved in liquid?

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Hi so sorry you are suffering. I couldn't tolerate methotrexate either. I am on leflunomide 20mg daily and sulphasalasine 4 tablets daily two in the morning and another two at night and naproxen. Zap pain etc. I have just had cortisone injection which has helped. Don't give up they will sort something soon that suits u. Big hugs keep smiling x

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Hi sabrejen! Unfortunately due to the horror incident at the start of my life with RA with MTX tablets I can not tolerate tablets! Which limits my pain relief and also can not have sulphasalasine! Which is a pain! Always can’t take anti sickness tablets! :( which one is the cortisone injection?! I’m currently waiting for my 6 month mark of MTX not working to be put on a biological drug! Which is January so fingers crossed it will fly by!

Thank you for replying ❤️ Xx

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Cortisone injection is the quickest way to reduce inflammation. It's what rheumatology always offer when ur struggling. Leflunomide have u been offered this is the next thing they offer u if methotrexate doesn't agree with u. It doesn't make u feel sick which I'm so greateful for. Ur so so young to have RA life cam be so cruel bless u. I was 51 when I got diagnosed and have had it two years this Feb. X

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I have had my knees drained and injected 3 times with something but I’m not 100% sure what it is! I will have it on one of my letter somewhere. I’ve always had the depo steroid injection in my bottom twice without any differences! I am really struggling because it has stripped my independence away for the moment, I’m on crutches, and got splints on my hands and knees so can’t work or shop or anything a normal 23 years old would do! How was you at the start of you dignosis? Was you active when you first got dignosed? I am very inactive and very very stiff! People tell me it will get better but I can’t really see that as of yet!xxx

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I'm so sorry RA when not under control is horrendous. I couldn't even get out of bed without help. I have never cried so much from the pain my levels ESR 94 and CRP 53. Horrendous I had my knees drained that helps. Bloody awful what we have to go through. No one understands except for us what it is like. I was active and fit before I got RA used to walk for miles abs swim and run etc etc. I've had a few steroids to my bottom area too. They do work u think they don't but they help while the medication gets into your system. Ask about leflunomide. They will get ur inflammation down ur young u have time on your hands. Be patient and ask loads of questions. Don't give up x x

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That sounds so miserable, and well done for lasting on methotrexate this long.

I'm surprised that your consultant hasn't suggested liquid folic acid (which exists) or even more simply to crush a tablet between two teaspoons and then mix the powder with some food that you really, really like. Taking folic acid can really help with the nausea. Some people take 5mg a day.

Have you also talked to your rheumy anout adding in other drugs apart from sulphasalazine? There are several that could help control it a bit better. And yes they are tablets, but they could probabky be crushed too.

As even if you get to start the process for biologic drugs in January it can still take months to get approval. And sounds like you need something to wrok quickly for you right now.

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Hi helix!

My Rheumy told me I had to be on MTX for 6 months before trying anything else so really battling it out at the moment!!

My rheumy and GP has both told me that liquid folic acid and liquid anti inflammatories do not exisit! Which I know is a complete lie!

My consultant saying she can’t add anymore drugs to my long list at the moment due to have not having much of a choice with liquid form!

I’ve been told that biologic can take months to get the right approval and funding! She’s leaning towards TOC! But won’t find out until my appointment on the 7th of jan!

I have raised my concerns with my consultant so many times about the sickness and my numbness of my leg after taking my injection and I seemed to get fobbed off all the time as if it’s a normal thing and I should put up with it. Having RA at 23 year old or any ages is hard enough but the added sickness and new flares is just too much. Really starting to affect my outlook on this life xxx

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It's good that you've got an appointment in Jan to discuss overall treatment. But it seems to me that the thing that would improve your quality of life right now would be to tackle the nausea. Have you tried crushing folic acid tablets? Some tablets you can't crush as they need to get to your stomach before being broken down, but you can with folic acid. Amd it can really have a remarkable effect.

If not write a very calm letter to your GP or consultant describing the impact of not beimg given medicine to control side effects and insisting on a prescription for liquid folic acid.

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I haven’t crushing the folic acid but I have with anti inflammatory and there still had the same effect as tablets, I was very sick with them. I’m sort of in a rock and a hard place but I will definitely be insisting on some liquid folic acid if that is the answer!

Thank you

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Hi Abbie. Do sorry to hear about your struggles at the moment. I too experienced extreme nausea and sickness. Folic acid is the answer, insist on a liquid prescription to help you. Using the approach as to how this is all affecting and having a serious impact on your ‘wellbeing’ a powerful word that hopefully the professionals will sit up and take notice. Keeping my fingers crossed 🤞🏻that you will soon get help and support.

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I’ve been writing in a sick diary as well as my pain diary when my bad days are here. I am very unmanageable at the moment and can’t wait to be sorted so I can go back to work but most morning I can’t get out of bed so no chance of that any time soon!

Thank you very much for replying, I am gonna insist on a liquid folic acid.

Let’s see how this goes! Xxx

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Hi Abbie, how long have you been on Methotrexate? Sorry you’re feeling so rubbish.

I was the same whether it was tablet or injection and no matter how much folic acid/ginger/remedies I had. Methotrexate and Sulph make me so ill... like having the most horrific hangover every day. I was diagnosed at 25 (now 43) and I’m not going lie it’s not a path without challenges but you have to keep pushing your Rhumy and GP. Don’t feel like you’re being a pain because if something doesn’t suit you they have to keep trying. You’re young and your joints need protecting so keep telling them how ill it makes you feel and that you can’t function on it. I understand that we need to give drugs time to get used to but you do not need to put up with it long term along with pain. Hope this helps a little? Sarah xxx

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Hi sjhewitt42,

I have been on methotrexate since July the 16 so coming up to 6 months in January which is when they can finally look at alternative medicine.

I have heard that MTX doesn’t suit most people, I’ve been upped and upped since my diagnosis because I have aggressive knees and are in a Constant flare up and in pain every day. I am really looking forward to jan so they hopefully take me off methotrexate! I am off on holiday soon I decided to treat myself due to have some a rubbish start with the RA and have heard sun and warmth can help so fingers crosssed!

Because I already had trouble the the tablets my rhumy isn’t very helpful towards me and told me that she basically done everything but I know you can get certain liquid form of tablets.

I have been without anti inflammatory for 2 months and now just got a new joint flare up which shouldn’t really happy on 25mg of MTX.

The challenges since diagnosis have bee long and hard and winding. Hopefully I will start calming down soon!

Thank you so much for replying xxx

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I hope your holiday helps and you get sorted. Please keep on at them until you get the treatment you deserve.. my Rhumy was extremely unsympathetic when I started out and told me he didn’t have a magic wand when I cried in his office!! You have to keep pushing and fighting unfortunately as it’s all about money xx Sarah

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This is exactly how I feel they are with me becausee I’m an awkward customer to them 😡 thank you so much and hopefully the holiday will be lovely!xx

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Hi Abbie, such a young age to have these problems, you need more advice from Rumy nurse or consultant, we are fortunate in this area as help is only a phone call away from advice,I may not get a reply the same day but within 2 days.

If you fit the criteria I have found that with Benepali and Methotexrate on different days they compliment each other so perhaps you may be able to reduce MTX, I think that the majority of MTX users feel the after effects like sickness etc for 2days after. So stick in there and see your specialist as some GPS are unable to give a prescription for Benepali owing to cost and I think that it has to be prescribed by a consultant, hope that you improve soon.

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Hi Jackadoodle,

I will be giving rhumy and MRAS a call today just for some advice. My rhumy nurse as lovely and really try and help but sometimes I feel like they have better things to be doing:

I will definitely be mentioning this to my consultant, I’m gonna ring and try and get an emergency appointment due to this new flare so we shall see!

Thank you so much for reply! Xx

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So sorry abbie to hear your news. I had trouble with mxt tablets tried sulfa.something! And another tablet forgotten name bad for stomach then changed to injections. Had nausea which is mostly ok now but gp gave me prescription for domperidone really good. Also have had folic acid tablets every day except injection day. Both are very small so should not be hard for you to swallow. Good luck.

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When we get side effects and are offered other meds to take away these symptoms we should like always, in my opinion find out how these meds may affect you and what kind of additional risks you are taking. Domperidone is a very controversial med. Here some information.

journals.lww.com/cardiovasc...

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Hi Simba was not as informed about domperidone as you, bit of a worry although I only take it very occasionally . I only wanted to try and help abbie as she is obviously having a hard time especially for someone so young thanks for your info.

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I am glad you had no problems with it and are not taking it all the time. I was offered this med as well and was infact glad I looked it up before taking it. The doctor mentioned nothing about the risks:( Not easy in this jungle of meds! Take care, Simba

So this was a reply to Uga not to myself! sorry

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Hi Abbie, so sorry to hear you are struggling but you have definitely come to the right place for advice and support. I too was diagnosed quite young in my mid twenties but had had various joint problems and septic arthritis when a child before that, although I am much older than that now :) I won't go into detail about my struggles because you obviously know this from your own but hang in there things will get better. It may take some time and some trials and errors but there are many more drugs out there now that can be tried and one of them will work for you.

I too found MTX made me very sick, tablets and then injections, which like you made me dread my injection day to the extent that i would be sick before doing it. I would be sick for 5 days out of 7 and eventually had to stop the injections and go back to tablets and take folic acid 6 days a week which made a lot of difference. I haven't been able to increase my MTX since so am now on Benpali too. The suggestion of crushing the folic acid sounds like a good idea if you can try it?

I really hope that you find some relief soon but don't give up and do keep badgering the rheumy's/GP etc but also keep in touch with us on here too for support from people who have all been where you are now. There's lots of good advice and ideas but if all else fails we are here for you to have a scream and shout and not be judged or dismissed. Keep warm and look forward to hearing how you are getting on. X

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Folic acid liquid: drugs.com/uk/lexpec-2-5mg-5...

Definitely available!

Most of us have found that taking this every day except the day of the injection helps.

A lower dose while your body gets used to it might help - and covered with a steroid injection meanwhile to reduce the pain and swelling.

But you need to calmly record everything and nag gently your health team!

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I would really think a young person like you, with long life ahead would get more help than you are getting:( Having you hang on to Mtx when you are so sick and when it's evidently not working just because there is some kind of 6m rule. In US you are moved to biologics after 3m of mtx not working and here in France if you have a hard time with mtx you can be moved to biologics even sooner. Sorry that rules trumph the patients wellbeing:(

If you are not getting help from the pharma side perhaps you could try to find help from the integrated med side where the approach is more holistic and you would get help with adjusting diet and perhaps try LDN which has helped many that have had problems with RA meds. I do hope you will find a solution soon and people that are willing and able to help you. Take care. xxSimba

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Simba what is LDN?

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Here you have the 2018 fact sheet on LDN😊👍🏻

ldnresearchtrust.org/2018-f...

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Thanks. Do you take it Simba? How long have you been on it?

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Yes I take it and have been on it nearly 3 years. Had a pause for about 4m and had my first flare so went back to it. For me it has definately had a calming effect and also decreases pain, gives good quality sleep. For some it has really been a game changer.

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Hey Abbie

I'm 23 aswell! Jinx!

So sorry to hear about what you're going through. It really does feel like the longest tunnel that you will never get out of, particularly when you're prescribed mtx and it doesn't work. I was on mtx, hydroxychloroquine, prednisolone, sulfasalazine (only for 3 weeks because it gave me massive headaches) and they just didn't work. Well, the steroids helped but nothing else made much of an impact. I wasn't able to trial biologics until I had 'failed' a methotrexate combination. So that was 7 months of horrible swelling and pain (and steriod injections into my ankles not wrists). I am still swollen and stiff and fatigued... but in less overall pain on benepali. The idea is that they will eventually find something which works for you. You seem to have quite aggressive onset like me. There are so many new medications out there and it's a case of waiting (which can be agonising) and keeping your fingers crossed that you get onto the right one before you start climbing the walls.

At first mtx made me very lightheaded and nauseous, but that passed after around 3 months. I hope it passes for you too. I am also taking folic acid 3x a day alongside it, though.

So good to hear from you and fingers crossed you begin to feel better

xx

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Hi Abbie

I am on 20mg MTX (jab) and my mother-in-laws neighbour is like you on 25mg MTX (jab). She had to hit 25mg before she could get off steroids and get her arthritis under control.

However lucky her, she has never had a problem with MTX and only needs to take her folic acid 1 day a week!

It took me a good few weeks to get use to the MTX. I started having nausea issues from 15mg. After that my body finally accepted the MTX but I employ a number of tricks to keep me on track when it comes to the nausea.

1 - taking my MTX just before I go to bed

2 - having a VERY 'chillaxing day' the next day

3 - coffee helps me - just a couple of cups

4 - folic acid 6 days a week

5 - on the odd occasion now if the nausea is really bad I take anti sickness meds which I got the GP to prescribe, they take the edge off.

However all said and done I have never thrown up. Have you asked your consultant how long you need to persevere before they offer an alternative?

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Oh Abbie, I'm so sorry you're not being listened to, or rather they're not acting upon your reporting of side effects, that's just rubbish & so unfair on you. As someone who's done well on MTX for a long time & just now starting to have a few niggles I can at least empathise a little, it's unfair your life is being impacted on so & at such a young age, when you should be carefree & out enjoying life. You've had them long enough now, time for a change but you'll need to be assertive, not always easy but it's become a real necessity.

My first thought before reading your replies, I've not been able to read them all so apols if anything's already been covered, was to formulate a plan, ask, no, request that as you tolerated MTX better at a lower dose that it is reduced the dose you felt OK on & another DMARD added. You have options other than sulfasalazine, there's hydroxychloroquine (which is available in liquid on special order from the manufacturer) & leflunomide (which I don't think is but do ask if it's viable). The most important thing is to get your RD under control so if your Rheumy isn't of the opinion these are options for you request they discuss the process & start fast tracking to an anti-TNF/JAK biologic at your appointment in January.

If you don't take maximum dose folic it may be increased, that is also available in liquid form, or ask if your prescribe an anti emetic. I take prochlorperazine but there are others even if the first one doesn't help enough.

You could try hot of cold on your worst affected joints, whichever you respond to best, or try them alternatively. If you're not prescribed an NSAID ask if ibuprofen or naproxen would be helpful (both available in liquid, or suppositories), or diclofenac (topical gel, liquid or suppository) is another option.

I really wanted to say that we support you, no need to feel as though you're on your own in this. It can be a bugger of a disease & so much more unfair when it happens young, the oldies amongt us have at least been spared it til later in life!

Keep posting, whether it's rant, rave or just have a moan, we'll try to help if needed, or we'll just listen whatever's needed.

Take care Abbie. x

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Hi there Abbie, I’m 20 y/o and was diagnosed in July too! I’m on 25mg of methotrexate, table form, and I haven’t had any luck! I’ve currently had no positive effects from the meds and if anything, my arthritis has gotten worse. Unfortunately my arthritis is unpredictable with it affecting anywhere in my body, but mainly targeting both feet. This is my first time replying/writing on this forum so I’m mainly commenting so I can get advice too:) I think I’m at the same stage as you mentally as i am practically bed ridden at the minute and feel nothing but frustration! What supports do you have for your knees as I would be interested if I could try something new to help ease the pain for myself?

Also, when I’m having bad days with my knees, sometimes it helps if i switch from hot to cold packs every 5 minutes, it’s a bit excessive for only a tiny bit of relief but every little helps when your in agony! I know you’ve probably tried this but it’s a good excuse to sit down and watch some TV!

I hope you get some rest, whether from mental or physical pain!

Xo

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Hi EllenR,

This stage is the absolutely worse! I am still in bed all the time and struggling to bathe myself!! Absolutely nightmare. Unfortunately for me I live on my own so I have to struggle everyday with everyday things!

I brought my splint off eBay, medical recommended! & they are the best thing ever! I also cut the toes off fluffy socks for when I go out so I have a little protection from the cold England weather!

The hot and cold packs don’t work for me unfortunately! I have literally tried everything with very little improvement 💔!

Also if you need to have a chat I’m always on here! Just give me a message! It’s nice to see someone in the same stage as me! Well not nice 🤣 but you know what I mean!xxx

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Bless you Abbie, I can sympathise with not being able to bathe etc, I’m at uni and live in a house that has a wall across half of the bath- making it VERY difficult to use the shower! It’s the small things like that which make the whole situation worse! I’m lucky enough to have a bunch of lovely housemates to help me with the small things and I can’t imagine the pain you have to go through to just do the smallest thing, my heart goes out to you!💔

Have you had the steroid injections? Guessing you have😔 also I take folic acid 6 days a week for the sickness and I haven’t had much relief, but I’ll give it a while before I ask for another solution.

Do you mind if I can add you on some form of social media so we can stay in touch?

Xo

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Abbie know how you feel about the Methotrexate was so unwell with it too. Same with Leflunomide but worse it took so long to come out of my system. Was due to get a hip operation but had to cancel because I felt so bad. It was coming on to this site that kept me going and made me realise how this helps us to share things and get advise.

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Hey Abbie - just remember what you are going through right now is not forever. You will get better. Contact your Rheumy and tell them you need to see them asap. I changed from injections to tablets. There are meds that can help with the pain you feel right now. Wishing you a very swift recovery. Hugs Hessie

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Coffee can actually help with the side effects of mtx. Here is how the study was done.

atlasofscience.org/coffee-f...

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