Methotrexate decisions?

I was diagnosed rheumatoid and February I couldn't get in to see a doctor until March. it is now April and I am on my third week of this medication. I have noticed a change in my digestive system. being the third week of treatment my stomach is upset and I also have headache and I have not slept all night due to this distribance. I feel nauseating when I think of eating..I now wonder should I go off treatment? Would my rheumatologist agree with me not wanting it? Wouldn't just predisone n nsids be enough to slow down my RA? I'm just upset and don't like feeling low key..All my activities has been put to a halt..because I can't move without pain or flare..I have been doing range of motions, but I don't know if it's worth the risk of taking this medication? ? Just confused? I know when I'm on predisone I feel much better n I know it's a on n off thing too. I'm 56 diabetes along with them wanting me to see a endocrinologist as well..all new diagnosis and I try to b positive. .I still have pain so is methotrexate worth it?

24 Replies

  • It took me 9 weeks to get used to Methotrexate, and for it to start working, but since then it's been fine. That was many years ago now and I'm fairly pain free and can live a normal life. So for me it has been a wonderful drug, although the first few months were unpleasant. I felt sick, had an upset stomach, headaches and generally felt dreadful as well as being in pain from the disease. It was really one of the worst times in my life!

    It's your choice, but long term use of NSAIDs and particularly steroids do some bad things to your body as well, and don't stop the disease progressing. Most rheumies would not want a patient to stay on steroids long term unless there was no other choice, and mine won't prescribe them except for short term use.

    If it's only a few weeks then the methotrexate won't have started working yet, so you won't be feeling the benefits.

  • Thank you..I just talk to my rheumatologist and he wants me to stop it due to my tongue feeling burned n bruising popping up out of no where. .He afraid of my whole blood counts dropping whatever that means? But I have to get another blood work done so he can see what's going On. Yes I do know the consequences of NSIDS. .I'm currently on a muscle relaxer too..I just hate taking it all honesty and I hate my pain and knowing it can't b stopped. .I'm a newby to this so I'm searching in support n how to b positive about my situation as well..I'm pretty much bed ridden n if I do get up to walk through my hose it's a yayyyyyyyyyyyyy for but my joints hurt so bad

    .ty so much for replying I do appreciate all the advise..

  • If your rheumy is concerned then listen to him. There are many other drugs that you can try apart from MTX, and that treat the disease itself not just cover up the symptoms.

    But after I was first diagnosed it got so bad that I was virtually bedridden too, but now I'm fine so please don't give up hope. It is a horrible shock to get the diagnosis but it can be ok.

    NRAS have a helpline you can call if you want to talk to someone, google for details. they are very good.

  • Ok ty very much

  • You may need to talk to your rheumy team - most run a nurse specialist telephone helpline, you may find the number and times on your clinic report letter or hospital website. It may be a case of trying a lower dose as some people can adjust and keep taking it. Unfortunately although steroids do help they are not a good long term solution. Do not despair because if mtx really does not suit you there are other medications but it could take time to find the right combination. Farm

  • Thank you:)

  • I agree with helix helix. I felt really ill when I first started MTX Since then I have changed to injections, increased my folic acid, and have got to the point of tolerating the side effects.

    It took 3 months to start to kick in, and the dose had to be adjusted gradually.

    It's a sad fact that all the effective drugs for RD take time to work. But it's usually worth sticking with it! Steroids may mask the symptoms, but will not prevent damage to the joints. Short term they can give fantastic relief, but longterm use can be dangerous.

    I do hope that the MTX kicks in soon. It's hard to stick with something when you aren't feeling better.

    Good luck. M x

  • Generally if you feel you have problems with MXT you should call the RA Nurse or your Specialist, you should be having blood tests on a regular basis. With you having Diabetes , you need to consider that condition as well. So to also see an Endocrinologist may also be a good idea so they can both get their heads together. and so call the RA Nurse and take that advice, personally I am unable to say stop taking MXT as I am not a GP, If you have problems discussing this call your GP'

    When it comes to Steroids, they may only be given for a short period of time. Also do not worry regards DMARDS there are quite a few to try.


  • Thank you..yes my rheumatologist wants me to stop..soon as I said my tongue feels burnt..and he wants another blood work and he did up my dose on yayyyyyyyyyyyyy me I'm back at square one..yes I don't like being on steroids as well I'm not a skinny person to be on it..but I have to say my family doc put me on tizanidine and indomethacin which work well with my pain level..more I can say about the methotrexate? ? I'm learning n I'm Newby to RA..ty for your advice :)

  • I'm afraid I do tend to agree with helixhelix. I've seen first hand, my wonderful Mum, the devastating affects RA does to the body when just put on steroids and NSAIDS, both in terms of damage from RA and damage from steroids. In 1977, the DMARDS we have didn't exist nor the wonderful scientific advancements we've seen (which my mum trialled) and I now take. Yes, The MTX can make you feel unwell but I'd rather that then the damage the RA does. This is all a very personal experience however and all I can suggest is speaking to your Rheumy about your concerns and look on the NRAS website. I've rung the helpline myself for advice and they are so helpful.

    I am sorry about your diagnosis and welcome to the unpredictable world of RA. This forum is very supportive and the advice, suggestions and support I've had have been most gratefully received.

  • Sorry about your mom..I've never ever new anyone who had RA..It's an evil disease. Being new to this pain is not what I call living fully..I was ready to make life changes for the better me then bamb..wham..I got hit hard..had to wait for an opening spot for a month but my family doctor was doing pretty well in treating me n he diagnosed right on the spot..I'm greatful for that..I already have changes going on on my hands n my left knee..I will know more in a week what's going on by the I have to get another blood work see what's going on he is worried I could develop blood clots from the methotrexate. .ty for your advise..

  • No problem. I'm 34 and was diagnosed at Christmas. I have 2 year old twins too and have been very surprised at the speed at which its affected me and being able to do simple tasks. It's a long story but I was mis-managed an not referred so I missed out on 4 months of treatment. If the MTX doesn't agree, then there are others. It's all about balance and trial and error. Feels horrid when your going through it though...I'm not very patient!

  • Hiya linda55 & welcome. I started on MTX tablets 6 years ago & they made me nauseous too but not to the extent I couldn't cope so possibly not as badly as you. I was prepared for it & tried some things to ease it but none worked. That said when my Consultant asked how I felt at the next appointment 3 months later I told him & he increased my folic acid to the day before as well as the original day after. Still I had some nausea so he changed me to injections which solved the problem in the main & as I was reacting well to it considered it was worth it. Now I take folic acid every day except injection day & all is well.

    If you explain to your Rheumy how you're feeling he should be sympathetic, I can't second guess what he will say but he will certainly know that this is a common symptom. Your drug monitoring blood tests will keep him updated as to any changes in your inflammation levels & bloods & if there's anything untoward he's able to act on it.

    Unfortunately steroids & NSAIDs won't treat your RD, they will reduce the inflammation & so ease the pain. The reason for DMARDS is that they treat the underlying disease itself rather than treating the symptoms. Generally Rheumies prefer to use steroids as a short course to tackle inflammation as they can have a detrimental effect on the bones if used long term. I've had short (month long) courses in the past but unfortunately I'm now taking them long term but on a low dose because without them I flare. I'm prescribed supplements & a protector in an attempt to counteract any problems as a result.

    Don't worry, it can be a reaction to being new to the drug & sometimes the longer you're taking it will see your symptoms reducing or simply changing when you take it can make a difference. For example if you take your tablets all at once it can affect your tum more. My Consultant directed me split my dose through the day with meals which did ease the problem to a degree. If MTX doesn't work for you or an increase in folic acid doesn't help (on the advice of your Rheumy) there are other DMARDs he can prescribe.

    I hope it does work for you, it has been a very good drug for me but unfortunately not everybody reacts the same.

  • Thank you..well I called him n he is sympathetic. he wants me to stop them afraid of my blood platelet could b low with my unexplained bruising n sore tongue like I drank hot tea..he did up my folic..I'm on my 3rd week tx..but now he wants me to stop..believe me I want my pain n progression to stop's the worst..ty so much for your sincerity. .

  • Oh I know, it's unrelenting isn't it? You're fortunate that your Rheumy has prescribed steroids & NSAIDs, many don't I've learnt from others here. I don't understand why as DMARDs can take a good while before they reach their potential.

    I hope your bloods aren't too low, 3 weeks isn't overly long to have a great effect but he sounds as though he's on top of it.

    By the way, I bruise ever so easily & it's never been of any great concern but it can be an indication so it's definitely worth reporting if it's unusual for you.

    Did he say what he intends doing now you've been advised to withdraw the MTX?

  • Actually it was my family doctor who did the predisone n nsids..n muscle relaxer. .their called indomethacin and tizanidine. rheumatologist did not prescribed them but he said he keep me on s uprising ly you were has kept my pain level just a tad lower but when I flare it seems not to work for predisone it is intervals at a time..I'm in my 3rd week so he don't seem concern about a withdraw he want me to go have blood work again n he up my dosage of folic to 2 pills who you know about low blood count? Ty for responding

  • As neither are specialist meds then your GP is able to prescribe them & will have advised your Rheumy he's done so. I was prescibed DMARD, NSAIDs, steroids & pain relief at diagnosis but I've read here many don't & often need to struggle on until the DMARD is working.

    Amongst my meds are low dose steroids (on a long term basis) & NSAID & have only had a low dose steroid injection for trigger finger. I also take amitriptyline plus others. We're all different in how we react to meds so guess all the ones I'm on were considered adquate & the pain relief certainly helps though my thighs are the place where I'm reminded of it mostly.

    I have drug monitoring bloods fortnightly at the mo as I've recently had an increase in MTX & keep my own record book, but normall have them monthly & after my next blood test if my some of my levels haven't reduced further & others increased all being well I can go back to monthly & then review if another increase is needed.

  • Ty

  • Hi Linda and welcome,

    What ever is decided regarding MTX be patient as there is no DMARD which is fast reacting but when you've found the right one for you you will surely know it. In the meantime what emotional and practical support do you have? Whilst you are getting the right treatment together it's worth tapping into the NRAS help line, any local support group you know of and/or considering counsellor/therapist support if its right for you (plenty of us here has used such support and found it very helpful in the very difficult post diagnosis stage) and some of us use relaxation/meditation classes or private practice at home to help ourselves. A lot of us after diagnosis 'cleaned up' our diets to support our bodies in dealing with the illness and the meds at the same time and such changes may be worth considering.

    All the best


  • I am looking for support by this n other one in my family has daughter tries to support me but she has a difficult time accepting that I have a aweful disease. .I try to mask my pain around her..all I want to do is cry..cry..cry..because of my limitations in everything I do..I guess I could call arthritis foundation to see if there support groups but then I would not be able to go due to my pain n comfort..which also has inhibits my social life to a halt..ty for asking n welcome to any advice..yes I'm afraid of all they have to offer me to stop this progression. .I just feel helpless ..but I try to stay positive too..

  • There is the NRAS helpline if you feel you'd like to speak to someone. It a freephone number & they would be happy to talk through things with you 0800 298 7650. It may also be worth asking if there's an NRAS support group near to where you live.

  • Knee replacement

  • Hi Linda,

    I'm not surprised your daughter is struggling to come to terms with your condition... It's scary for you both and there is some grieving to be had.... Keep being honest with each other and be gentle with yourselves - you will get to the other side of this and regain some 'normality' in your life. That normality may look and feel different and maybe you won't be going out so much with friends but maybe those friends will be visiting you for a pot lunch or coffee more often.

    Re the knee are you under a physio if not asked to be refered.

    As for crying it's optional and sometimes very therapeutic just don't drown yourself!!!

    The sense of helplessness is also a normal response as your life is suddenly ruled by this alien called RA and the need to get to appointments etc but by doing little things to help yourself you will enable youself to claw back some control - try to, periodically, look away from what you have lost and look towards what you are gaining -that can be anything from a deeper relationship with your daughter as you support each other through this emotional time to having time on your hands to explore a new 'hobby' I've discovered sketching for the first time in my life... I will never open a studio but it relaxes me. Others write poetry, do photography and such like.... These things will unfold for you in time I am sure.

    In the meantime we here will continue to do our level best to support you.

    Warm wishes


  • Ty..well she supports me I think I feel I'm a burden. .and she works n does everything just saddens me that I'm not growing old gracefully..yes I will look into art work something she suggested..I'm all new to this n your right I need to focus forward not just hard..ty for the time n support..this does help alot..

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