Just about to start Methotrexate and am a bit scared!

So I saw the rheumy consultant today - so much better than my usual doctor - turns out she hasnt been handling me or my RA correctly and things should have happened at my first appointment 3 months ago and she didnt do them! Anyway, the sulfa doesnt seem to be working by itself, so he has put me on methotrexate too - I am only 26, and would like a family at some point - no plans for at least the next 5 years, but I am still worried.

The side effects and experiences people have had with it sound horrendous - I just wanted to know your experiences with it to prepare myself for the worst, but also have my fingers crossed that it is the wonder drug I need! Am on steroids for the next 12 weeks, fun, pain free times again I hope, until the methotrexate has kicked in.

Any comments or advice would be welcomed :oD

10 Replies

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  • Hello there,

    I started on Methotrexate 6 weeks ago & was really worried. Nobody can say how it'll be for you but my experience has been absolutely fine.

    I'm on 15mg now and thought a headache I had a while back that lasted 3 days was a side effect but, for various reasons, I now think it was probably caused by steroids.

    Honestly, I looked at those Methotrexate tablets with such suspicion at first but I've had no nausea, no funny taste in mouth, no weird sensations..... and they no longer scare me at all even though I am a complete wuss.

    Hope all goes well for you too!

    Christina x

    Oh, just seen that you are on steroids too while the Methotrexate kicks in, just as I am. With the exception, possibly, of that annoying headache, they have been fine too. All I'm a bit worried about re. steroids is what life will be like without them in 6 weeks time.

  • Hi EmsyB. Please remember that all the negative things you read about MTX on here are just going to be a drop in the ocean compared to all the people who tolerate it fine. People like me come on here sometimes and moan about this drug or others but it is generally very well tolerated - only those people don't always come on here to say so because they take it for granted probably.

    I know I was terrified of taking it but for 6 months I only had a few small side effects - these being a foul taste afterwards and a few weird spots on my face and some tiredness. Recently I've been feeling sick after taking it but that's going to be addressed by my coming back down a dose to 15mgs again (just taken my 6 pills) and is probably as much to do with the other DMARD I'm on I believe. If I continue to feel sick I can switch to taking it by injection which many on here say makes a huge difference. But basically it's been incredibly effective for my RA symptoms to date and I hope it will be for yours too.

    Re the baby thing - I do hope you told your rheumy about this? I think you have to come off it well in advance of trying to conceive so if you didn't mention it then you may want to do so before starting? Someone else on here has not been allowed to take it because she's at childbearing age - even though she has no plans to have kids just now. Maybe she'll come on and speak about it but I would make absolutely sure you know the facts (phone the NRAS helpline) before you start. Tilda xx

  • Hi there,

    I would say keep taking the methotrexate. I have been on 30mg now for 8 years along with sulfasalazine and hydroxychloroquine. At first yes it was hard but now I would rather take it than let the disease damage any more of my joints( I have had both hips replaced). I would say it is the best drug for managing your condition and as long as you take folic acid the day after you take the MTX that will help with any side affects.

    As to starting a family all I know is that you have to come off the drugs but that is something you should discuss with your Rheumy. I have RA as does my cousin and we both have children but everyone is different ,so as I have said have a chat with your rheumy. Amanda xx

  • Hi, I've been on mtx since May and the difference it has made to my pain and stiffness has been huge. I went from being in terrible daily pain to being almost pain free. I've not suffered nausea to date but have been shedding some hair which has been helped by a recent increase in folic acid. I've also been a bit run down recently with a throat infection but who knows if the mtx was to blame? Personally I'd take the mtx over the pain any day. Try not to be too worried as many people are fine on mtx.

    Paula x

  • A lot of people do really well on methotrexate and it can give really good results x

  • hi i am new to this site but would like to say i also have been on methotrexate 10mg weekly and i have had no side effects also take sulfasalazine 6 tabs daily this works for me i still get discomfort but i manage i have had RA since age 40 im 42 now its hard and i have flare ups i hope it works for u x

  • Thanks for the comments - I certainly feel better! as for the child thing, the rheumy said to tell him when i am ready and he will manage it - i know i have to be off them for 3-6 months before trying to conceive

  • Hi there, I did have a few teething problems with MTX in the first few weeks. But after about 9 weeks they wore off. And the difference it made to the aches, and swellings, and general joint pain was brilliant. I started at a low does and slowly worked up, which really helped me. Hope it goes fine for you too. Polly

  • Hi,

    just wanted to add re-assurance from my own experience. Was diagnosed in Jan and started on 10mg a week at the strart of May. For the first few weeks I slept with a bowl by the side of my bed convinced I was going to be incredibly sick, but apart from the slightest feelings of nausea the morning after (which have now gone), have had no side effects at all. Did have to stop for one week, due to raised liver levels, but these went back down to normal (and rheumy nurse said they could have been caused by other things). Noticed an imrpovement after about 8 weeks and this week have almost felt back to normal (loads more energy, hardly any stiffness and very little joint pain.) So hope it goes well for you, fingers crossed,

    Caroline x

  • Hi emsyb 1986

    I was only diagnosed in June, and I just started methotrexate on Sunday. So far so good but im only on 7.5mg and then that doubles in 3 weeks to 15mg, and I am due to see my rheumy again in 3 weeks. I was really apprehensive and I still am about the medication, but its not an option not to take anything either. My rheumy chatted with me at length as I have just had a baby 5 months ago, she said if i wasnt planning any more pregnancies then that would make treating me easier as methotrexate cannot be taken if I was planning another baby, she said you need to come off it for 6 months before you can conceive safely, it used to be 3 months but they changed it to 6 for safety reasons. I hope that helps, i would discuss how easy it would be for you to stop and whether that would cause a flare in your symptoms, and if there would be anything else you could take in its place when your planning a family. I hope you reach right decision for you.

    Take care and stay well

    Lyndah xx

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