Methotrexate side effects

I hope this will not sound too longwinded but it is the first time I have used a forum. I was diagnosed with RA in June 09 aged 55. I was started on methotrexate but always struggled with nausea & indigestion and take 20mg in 4 doses over 24hrs. I was wondering about asking for it as an injection to reduce the nausea and enable me to eat more to counteract the weight loss. Methotrexate never helped sufficiently and I could not tolerate sulphasalazine so was started on Embrel June 10. It helped my joints but I developed injection site reactions so was changed to Cimzia. This has been better & my joints are fairly settled apart from the flares but it is a very sore injection - is this typical?

Fatigues as also a real problem as the can happen at any time especially if I overdo it - walking my dogs on my own is a bit of a worry. My haemoglobin has always been a bit low & I now have low iron in my blood but can not manage to take any worthwhile supplementation. Any comment or help would be much appreciated.

32 Replies

oldestnewest
  • Hi Rowan, just wanted to say hello and i hope you get some answers - I know that a few people on here have been changed to injecting Metx to try to stop the nausea and it worked for a while. I am still taking it by tablet form and am trying to get moved to something more powerful.

  • Welcome to the forum, you will find lots of helpful people here!

    First, MTX. The tablets made me ill, so I am on injections now, called Metoject. The dose is lower, but the effect is better and I hardly ever get sick anymore. So worth a try, I think.

    I can't help with Cimzia, but someone else will.

    Fatigue, I am afraid, is part of the disease. Many of us cope by pacing ourselves, and resting often. Not exactly encouraging, sorry!

    And finally, one of the best iron supplements I have tried is sachets of Spatone, from high street chemists. A bit expensive, but no side effects. And apparently we absorb iron better if we have Vitamin C too.

    (Dietary advice would be red meat, liver or dark green veg I think.)

    Anyway, hope I have been of some help,

    Cheers!

  • Hi Rowan, just wanted to say welcome.

    I am currently not taking MTX anymore but did take it for 5 years but I think it must be hard to take it 4 times in the one day as I always struggled taking it just the once.

    Have you asked for anti sickness tablets as they may help.

    I only ever took it in tablet form but from what I have heard other people say it seems better using the injection method.

    The fatigue is a bad effect of this disease and can hit you at any time.

    Hope things improve for you and I am sure others here will be able to give you some advice.

    Mary x

  • I was told to take it at night as your body is better able to cope with it. I had horrible side effects - the runs - which made working life rather difficult ! but that has largely subsided now. I think that everyone reacts in a different way but in my experience the side effects do vary. Some weeks I feel really shattered after my weekly dose, others not. I do plan to not do very much on the day after my dose. And as for fatigue - as Mary says that's also a general RA thing, but pacing yourself does help. This involves for instance breaking a job into several parts and taking a sit down in between the various parts. I've often got to get my partner to finish off a meal if I'm cooking for friends but then they assume he's done it all! - cant win. I hope you do start to feel better. Incidentally I'm also on 20 mg of mtx a week.

  • Well I've certainly never assumed that your partner has done all the cooking Cathie - and very delicious it has been on all three occasions I might add! X

  • Thanks very much. We're experiementing this week with a fish tajine from a French book lent by my taji teacher. Sounds good and easy too

  • I take mine at night too so I sleep through any nausea I might get. I also do it on a Friday so I don't have to worry about work if I do end up feeling poorly. The injection does seem to make a difference to the side effects I suffer. I can tolerate 25mg if administered by jab but only 20mg before I start to feel sick on the tablets...

  • It sounds as though your side effects vary as well? I wish I could understand what affects that. But at least I can do the same as you - I tend to take them on a Thursday as (retired) I dont work on a Friday or have many other activities

  • Hi Cathie when I mentioned Methotrexate caused me to be loose the consultant poo pooded it sorry for dreadful spelling.

  • Well it happened to me too. Had to stop eating raw vegetables and salads except at home

  • Yes we need to take whatever action is needed to cope dont we.

  • Hi and welcome to this site some lovely people on here always helpful. I currently not using MTX could not manage the side effects i was using injections to. It seems i need a gallbladder out will try with MTX again when this is done. It seem it good for RA i did find the fatigue was better xx

  • Hello there,

    welcome! I used to take Methotrexate by injection and it did not make me nauseous. Although I had to stop taking it for other reasons, in the short time I was taking it, it did make a difference to the swelling in my wrists. I hope that taking it by injection works for you. I can't comment on the sore injection after Cimzia, but hopefully someone else can.

    All the best,

    Francherry

  • There a wide variety of prescription iron supplements.. have you tried any?.. or if you want to but your own floradix liquid tastes yummy..

  • Thank you all for your helpful replies & support. We all obviously have our own individual symptoms of RA & side effects to the medicines that help us. We will definitely talk to the specialist team about changing to MTX injection.

  • Hi summer32 I could not manage any of the prescription tablets but can manage a little of Floradix or Spatone on the days away from MTX. I am hoping if the MTX injections help I can boost my iron intake which will up my haemoglobin & the energy I need to walk my 3 dogs! Cheers

  • I too have three dogs & on MTX,though a very low dose (12.5)I do get the "runs" its a constant worry when walking the dogs,I do wear a lot of padding!! its pretty grim,but walking is my "thing" & am still managing up to 2 hours a day every day,if I don't have an accident!!? Think the worst side effect was mood swings,I really lost my temper with the oh & went for him with a chair, the bruising was spectacular!!This was when the dose was lowered! In spite of all this I still keep on with the MTX as it does seem to keep me more or less painfree, Hope thing get better for you ,take care, G

  • Hi Rowan,

    Welcome to the site. Ive been on MTX since feb this year it took a few weeks to settle down, I was very nauseous, the fatigue was really bad at first. As others have said the fatigue is part of the RA thing. I work four days a week in total, but have to split those days up & have 2 days off together, its the only way I can deal with it, I need one day to recover & 1 day to enjoy.

    I take mine on a sunday night, & sleep through the side effects that I use to get taking them on a morning, Im on 17,5mg mg MTx, on Hydroxy & Sulfaslazine too. I hope you get on better, sorry forgot how long you have been on MTX?

    Rie x

  • Hi Rowan, I came on here tonight as I've taken my first dose of mtx this week and feeling pretty awful so glad to see your post. I'd heard injections were better for side effects but was told by my doctor when I asked for them that generally people under 65 tolerate mtx without any trouble ... mmm!!

    I took my first dose of 10mg on Tuesday this week and worked from home yesterday (wed) in case it made me feel unwell as I'd heard the day after often can be bad. Felt ok, went into work today and by lunch felt dreadful, very bad nausea and slightly woozy. Hoping very much that it passes soon and that it doesn't get worse when I take my next dose. Good luck and hope you get the injections.

    Cathie, you could always try getting your husband to do the food prep and then you finish off claiming the glory for what would normally sound truly scrumptious dinners but with this nausea I can barely think of food!!

    Take care all Rx

  • metex tablets didn't do a thing for me and had nausea etc. Have been on metex injections, currently 30mg and they are working well. Started on 15mg and that lowere dose even helped, also taking sulpha and steroid. Very occasional nausea but seems to be more related to what I eat or drink, coffee is a no go.

  • Hi I got on well with methotrexate only problem being mouth sores and ulcers when I went above 15mg. Now on 10mg and Cimzia. I found the injection site tender when injecting into thigh as I cycle a lot and my legs don't have spare skin. I think the Cimzia was ending up in muscle not under the skin. I also think it was less effective as a result.

  • Hi and welcomed to the site. I am on methotrexate tabs 8 taken on a Friday. My worst side effect is the runs but that only lasts a day or two normally. Fatigue is something else as others have said you have to pace yourself. I am going out with friends tonight to see a group/band in a pub. It will make a nice change may have a dance with my stick beats pole dancing lol. Hope you keep visiting the site people on here are great.

  • Hi Rowan - welcome top the forum - I have been on MTX for a couple of months now - I felt really nauseous for the first couple of weeks. Initially I just took 5mgs of folic acid 48 hrs after MTX however I was told by my rheumy to increase the folic acid to 3 days following the MTX for the nausea this has certainly helped.

    I still feel rough 48 hrs after MTX so I tend to ensure that I don't have much to do on that day. That failed today as we took our grandkids to the Isle of Wight!

    Fatigue is something we all deal with - my rheumy said it would be last thing to go!!

  • Hi Rowan. I've been off injectable MTX for 2 weeks now and I'm really apprehensive about possible flare ups. It worked brilliantly for my RA but unfortunately I never made it higher than 17.5mg because of side effects. I think I'm very unlucky though and the problems I've had recently may well turn out to be nothing to do with the drug. I took it for 19 months - I was switched to injections a year ago because of GI problems. The injections are much more expensive than the tablets so you may find your rheumy team discourage this shift until you have tried it for a while properly as sometimes the side effects just go away or change.

    I hope you enjoy this forum - it is a great place to come for help and support and to offload - and in time to help and support others perhaps. X

  • Hi, I have been on MTX for three years now. I was also prescribed folic acid tabs 5 mg four days a week not to be taken on the day of taking MTX. The tabs also help with fatigue a little bit as well. You can always ask your rheumy nurse or consultant to prescribe them for you. I hope that helps

  • Hi again & thanks for all your replies. I have just had another day of nausea & sore tummy yesterday & today is my methotrexate day!! I see the specialist nurse next week & would like to try the MTX injection but am concerned as I had injection site reaction to Embrel & find the Cimzia very sore - what is the methotrexate injection like? I believe it is given under the skin with a fine insulin syringe. Has anyone reacted to the injection itself?

    Have a good day.

  • Hi Rowan5

    I have been on MTX injections for a long while. I also prefer my tummy as injection site. I have never heard a reaction to it or to the site . hope it goes well for you x

  • Hi, I don't have any problems with MTX Metoject injections. It's a very fine needle and I prefer it in my muffin-top to my thigh muscles, it seems easier and less painful.

    The only reaction can be a quick sting, a few seconds after injecting.

    One advantage is you can use a lower dose by injection.

  • Hi, I take 25 mg in tablet form every Thurs. night and like others above, I dont plan too much for Friday in case I feel nauseous and/or very fatigued. Must admit I dont always feel bad after I take it, but do sometimes. Fatigue is a symptom of RA so that hits me out of the blue and usually when i least need it!!! My dr. prescribed Lanzaprazole (sp?) to take one hour before a meal which I did for a while to help with the nausea. But I did stop it as i heard that had some side effects and to be honest I wasnt nauseous enough to warrant taking another pill. I take Naproxen now and then but always with or after food to protect my tummy. I am lucky in that I have a cast iron stomach and very little prevents me from eating! (Not always a good thing, as I could do with losing weight!)

    I've heard that injections alleviate the side effects so maybe you should have a chat with your GP or consultant about that possibility.

    Lynn x

  • Hello Rowan. I only joined site last week but have found the lovely help and words from the others has helped me greatly. I'm on MTX 25mg injections and infliximub infusion . It really is a nasty complaint. I. Feeling bad today so have had a moan on this site and everyone has been so kind. The tiredness is part of the complaint I'm afraid...I had no idea I could feel so tired and low. I hope you get help from talking to others with this complaint...you have joined the right site.x

  • I was diagnosed with aggressive RA in June of this year. I am 69. I am taking methatrexate once a week 6 tablets at once. I have been lucky enough to not experience any negative side effects and my flare ups have stopped. I was down to almost not working (was working 40 hrs) to maybe 3 days with days off in between the 3 days. I work in retail so on my feet all day. I think I will be able to go to 4 days a week at 5 hr days. I find I have spurts of energy and then sometimes all of a sudden I am tired and want a nap. I don't know if if weight gain in a side effect but I have gained about 20 lbs.. Good luck

  • I forgot to mention that I take img folic acid daily along with 2 meloxicam in the morning. All this taken after a couple of pieces of toast so it's not on an empty stomach.

You may also like...