National Rheumatoid Arthritis Society

MTX versus RA

Hi all. I am in my 10th week on mtx and an due to have my second week of injection on friday. Side effects were so bad with tablet form that i started last week on injection. This is done at rheumy clinic every friday for next 8 weeks until stabilised i have 15mg and then will be able to do them myself via gp. Problem i have is although RA has improved the side effects are driving me mad. I now hav 3 mouth ulcers one of them in side of my mouth which will not go and is keeping me awake at night. I just dont know whether it is worth it any more as so fed up with feeling lousy with mtx. Still feeling really tired and aching wrists so dont know whether to stop the meds and just take my chances with the RA. My feet and knees are much improved but still hav to watch what i do as feel as tho it isgoing to flare at any moment. Cant see light at end of tunnel at moment as unwell with the RA and unwell with mtx. Only fully diagnosed in july and already had plaquenil which was awful. On folic acid 3 times a week and arcoxia. So fed up at moment. Sorry for going on just dont know when i will finally accept this.

Reply

Already a member? Log in

19 replies

    summer
    summer

    Folic acid can be taken up to 6 times a week( not methotrexate day) speak to
    GP/ clinic about increasing this it should help. In the meantime difflam mouth wash. and anbesol liquid or adult stength gel are both good for pin relief x

    summer
    summer

    should say pain relief!!

    mads
    mads

    Debbie you are not going on and you have not been diagnosed long and its a shocking miserable git of a disease so no wonder you can't accept it. And getting no sleep is so debilitating, can you take any pain relief at all.
    From my limited knowledge i think the good thing about the metx is that if it is working it stops further distruction to your bones and you will not end up with deformities. when i was on the metx i had to use pain relief as well - even though the inflammation was down the pain was still there.
    On the other side know what you mean - i am now on leflunomide (arava) and i am having side effects (nothing really serious but annoying enough to wonder if it is worth it as i don't see much improvement)
    And i also wonder if the tiredness is more to do with the drugs or the ra.
    I used a mouth wash which helped with the mouth ulcers - trying to remember the name of it, its the ones the dentist uses. Corsdyl or something like that!
    good night and hope you have a good nights sleep.

    BossyB
    BossyB

    Thanks for ur comments i will try mouthwash. I am dreading friday as going straight to work after injection so i know i will feel awful all day as i did last week so dont know how i will get through the day. I am a call centre manager so hav to think on my feet most of the time and the mtxmakes me feel really tired and dizzy as well as sickly. Very cheesed off at moment so sorry for grief i am spreading.

    julieporter
    julieporter

    Really sorry your feeling so rough and totally understand how you feel about side effects v RA.The problem is that RA will damage your joints which can leave you with long term deformities.Have the RA clinic suggested anything that can help with the ulcers at all - maybe worth asking.I too feel a bit sickly the day after MTX but I've recently dropped Weds working and do my jab on Tuesday night - don't know if this is an option for you.I'm keeping my fingers crossed that the MTX works well for you and the side effects ease quickly
    Take care
    Julie xx

    sciqueen
    sciqueen

    Hi Debbie

    So sorry to hear that you are still suffering despite changing over to injection.

    Like you I have been having terrible side affects from the mtx tablets. I start the mtx training session this friday, followed by the nurse giving me my first injection. Next wk friday I do it myself infront of nurse and I think then, if she is happy she signs me off and I can do it at home by myself, the wk after that. I plan to do mine on my own at nites before I go to bed to minimise the side affects!

    I was really hoping it would be better with injection??? All I can say is persevere and I too will invest in some mouth wash before friday. Hopefully that will help.

    Good luck and keep us informed

    Sci x

    BossyB
    BossyB

    Will do. Wish i could do it myself so quickly i would do it at night also.. Good luck with urs also. Keep in touch xx

    TildaT
    TildaT

    Hi - commiserations Debbie re the MTX. But I don't quite understand why you can't ask to try another DMARD if MTX makes you feel that bad and you've given it 10 weeks? Perhaps Leflunomide or Sulphasalazine would work better for you with less side effects? Try it for a few more weeks with injections and if you are feeling no better then ask to try another drug instead maybe?

    I had to come off Sulpha because of the bad side effects for me but everyone has completely different tolerances and it seems wrong to persist if a specific drug is making you feel as ill as the disease itself?

    I'm fine with MTX (at least I hope I am unless tomorrow's bloods say otherwise) which is a huge relief after the Sulpha so suggest you ask your rheumy to try you out on a different DMARD if it's that bad - you might be like me in reverse?. Life's too short to have to cope with sickness, mouth ulcers, increased exhaustion etc for the long term it seems to me. TTx

    sylvi
    sylvi

    Hi debbie, i'm on sulpha as well as mtx. I must be in a minority as i don't have much side effects. The sides of my mouth crack and i get the odd blister. My rheumy showed how to do it once and i went home and got on with it. Mind you i had had an operation on my knee and had to inject myself for thirteen days so i did know what i was doing. I really feel for you while your going through this progress and your only diagnosed recently. Try to stick with it my friend,but keep in contact with your rheumy. It might help if you keep a diary each day about how you are feeling and the symptons your getting and take it to the hospital with you. It will give you something to focus on and it will help the hospital decide if your on the right medication.
    Keep your chin up and don't give in, we will all listen to you.
    Sylvi.xx

    Treesha
    Treesha

    Hi debbie regarding mouth ulcers I have been using corsodyl which is great for ulcers and clears them up fairly quickly. Unfortuntely for me though I get a terrible headache when I use it but you will probably be ok. I have issues with preservatives in things such as mouth washes and artificial tears. Give it a go if it works its one less issue to deal with. Good luck xxx

    Judi
    Judi

    Hi, I was troubed with mouth ulcers when I first went on to Mtx. (tablets) many years ago and I was advised by my rheumy nurse to double up my vitamin C tablets for a couple of days. Did this one day and by the next day the ulcers were greatly improved. I have done this on a few occasions as and when necessary and it has worked for me every time.

    BossyB
    BossyB

    Thanks for all your supportive comments, I will speak with my rheumy nurse on the 18th so will persevere with the mtx until then, if no better will ask for something new. Will try the mouthwashes and vitamin C as well so thanks all, its odd but there is no one else you can talk to like this as no one i know has this disease so not worth going on about it as you feel you are either boring them or they think you are a hypochondriac. (well you can see it in their eyes if you know what i mean) Anyway thank you all.

    Deb

    Tracy-maria
    Tracy-maria

    Hi Debbie,
    First time i have commented. I know exactly how you feel.
    I was diagnosed with RA 2 years ago. I am feeling exactly the same at the moment. I feel like i want to give up on all drugs.
    I have been given Mxt, sulf & hyd, plus lots of pain relief.
    I have altered the amounts over the last year to see if it helps.( with some help from RA nurse) I was on 25 mg mtx but am now on 15 mg, which i take on a Monday, with 1 folic acid on a Tuesday.
    Feeling really sick, tired and stressed etc....
    Have reduced my working hours to part time and am off till 19th Jan on sickness leave!!
    I believe it is up to the individual to help the RA Docs to say what works for you.
    Good luck and hope you feel better soon
    Tracy x

    Calliope
    Calliope

    Hang on in there, dont stop the meds please. I went gluten free and I feel sure it has helped me. I am two years in now take 20mg mxt a week plus other tablets. This is life changing but it is early days. Take care

    Maggie1
    Maggie1

    hello,
    Debbie RA isn't easy to live with is it....i have been having MTX injections for the last year and i always inject at night just before i go to sleep because of the nausea. i used to have it in tablet form but like you i was very sick and seemed to have a constant head ache.
    i also take Sulfazalasine and Hydroxychloraquine, i have no deformity but lots of pain, i stopped taking all my drugs for 8 weeks as i was really sick of taking them, i felt better in my self and my eyes looked bright and healthy but the pain was truly awful worse than ever really.....so reluctantly i am now back on everything.
    there doesn't seem to be an easy way to deal with this awful disease, i just find the best way of coping is to take a breath sometimes and really think about why i take all these nasty toxic drugs, and thank god i am not deformed, but the temptation to throw it all in the bin is still there. so i then come on and have a look at how everyone is doing on here ...this is where i find the strength to cope, because you are not alone, and the blogs that people write are very helpful and supportive.
    ask to change your MTX if it still makes you ill, but you may find that it will settle down after a while.
    keep on smiling :-)
    Maggie x

    warrior
    warrior

    poor you !i was on metho for 3yrs!pain /could not walk/wrist /knees /neck/feet/then had a tumour on foot/then broke my ankle/chest pain rushed to hosp/..........antidepressants/then high blood pressure tabs,folic acid/.....i then stopped taking all my medicines/moved to the country,meditated,enjoy life now no stress....i think major stress gives us this disease!!!!I am now walking still have pain..drive..make sure im happy every day ...peace be with you my friend i wish you well in your life................

    gigi5
    gigi5

    I can understand your frustation, I've had RA and fibromyalgia for over 20 years. Try soaking in a bath with ebsom salts at night, it will help ease some of the pain. Also for restlessness I been drinking tonic water with quinine, quinine is what helps. I say hang in there and never feel like you alone. Until I have read all the comments from so many, I felt alone and as if no one knew what I go through each day. And you really sound like me, it is tiring and you do get so fed up. I wish you luck and hope.

    Lilann
    Lilann

    Hi all i have been on immune suppressant drugs for 10 yrs first sulphazalazine for 8 yrs and mtx for the last 18 months, and during this time i have broke out in warts on my fingers 10 of them and still counting, also i have 3 verucca's on my feet . I have always suspected that they may be due to the drugs suppressing my immune system. I have tried every treatment out and had cryrotherapy on them which made them worse. When i have asked at the clinic about this they said they hadn't heard of this. I have managed to get my GP to refer me to a Dermatologist whom i saw last week, he said he has come across this a number of times with his patients. I am now in a catch 22 situation as the treatment he said could be available to me cannot be taken with mtx. I know warts do not sound much but my worry is that i have 3 little grandchildren and i would hate to pass them on to them and they can spread anywhere on the body. I am paranoid when they visit i make sure that my warts are covered, and do most of the time. I am wondering if anyone here has had my experience.
    These horrible things are really getting me down and knocking my confidence. While being on mtx i feel it has slowed my RA down but i don't sleep very well and does anybody have itching especially at night as a side effect.I count myself pretty fit in spite of my RA. i just don't know what to do i am waiting to see my Consultant to speak to him about my options on fighting my warts i wonder if i came off mtx for awhile it may give my immune system chance to fight them off. Then i have to take the chance of my RA advancing.i call myself The Wart Warrioress :);)

    cambridgeboy
    cambridgeboy

    hi ive had ra for 5 years and been on 25mg mtx aweek i find it helps and without mta the pain is really bad i take folic every day but but the day i take mtx you should take folic acid every day it really helps

Reply

Already a member? Log in

Back to Top