How long do people stay on MTX for?

Hi all, first post, be kind!

I've been diagnosed with RA approx a year ago, and have been on MTX for 9 months now. My question is, how long do people stay on MTX for? I'm 31, the pain and inflammation stopped almost immediately after starting MTX (7.5mg at first, now on 15mg with some irregularities in the blood test halting further progression). My RA specialist is two hours away and i see him again in six months and ALWAYS forget to ask any questions I have!

The main reason I ask is you can't conceive whilst on MTX (apparently this is mainly for females, but also suggested for males too) and I'm not getting any younger and would like another child.

Any help/reassurance/banter will be welcomed, I'm currently in the Armed Forces and will most likely be getting kicked out due to RA too, but I was going to quit anyway so win-win.

Cheers!

9 Replies

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  • We are always kind even if life isn't. lol x Short answer its lifelong if you want to remain pain free etc. But really you need to discuss medical stuff with your consultant as none of us are qualified to give you proper advice although the NRAS website is very, very helpful and does have a helpline when you can talk to a real person.

  • Hi JKPeach,

    Treatment with DMARDs is generally for life but there are certainly options to look at if you would like another child. I have put a link to the section on our website about pregnancy and motherhood for you to look at:

    nras.org.uk/pregnancy-and-p...

    I hope this is helpful to you

    Regards

    Beverley (NRAS Helpline)

  • Hi JKPeach

    The advice for taking MTX and trying to conceive is the same for women as it would be for men. Generally, it is recommended that you would need to be off of this drug for 3-6 months before trying to conceive, but as Beverley says, there would be some other options to help control your RA for this period. If it's a long break before your next appointment and you want to start trying soon, it might be worth seeing if you can get this appointment brought forward, or get a message to your rheumatologist that you want to try for another child and would like to start the process of coming off MTX but would need a prescription for another DMARD in its place.

    Hope that helps.

    Victoria

    (NRAS Helpline)

  • If you haven't got an appointment for 6 months I would suggest you need to push to be seen earlier. Not sure how it works in the army, but is there a way of communicating with your rheumy team - either via consultant's secretary or GP - to say you want to try to conceive ASAP so need advice and help? Since MTX & conception is a big no-no then you should get a response.

    It's a balancing act between controlling the disease and getting pregnant, but you need to have serious discussion with your doctors so you can make the right choice for you.

  • Hi JK Have a look at the Paddison program, Clint was wanting to have children so he had to do something read his story, google and youtube. paddisonprogram.com/

    I have been following his program for 18 months now, I am 100% Drug and Pain free. After 12 months I was total off all drugs. I worked with my Dr on coming off the drugs.

    The other day I did a podcast with Clint to tell my story.

    Good luck with your research, Just ask me if you have any questions. Have a look at the Paddison Facebook page, Clint will also answer any of your questions

  • Hi JKPeach

    Along with all the good advice above, I would reiterate that you might want to start flagging this up with rheumatology sooner rather than later.

    I was diagnosed at 30 ish and a few years later my wife and I wanted to have children. The advice given to me at the time was to come off everything (think that may have changed now) for a minimum of 6 months and manage the pain etc with steroids and painkillers.

    After 6 months I stored a sperm sample (well that wasn't embarrassing at all ☺️), with the thought that if I 'had' to go back on stronger meds we could always go down the IVF route.

    Luckily for me (or not depending on your point of view) we didn't have any problems conceiving and I went back on different drugs (can't remember for sure what now). Two years after number one was born, number two appeared - slightly by surprise, ahem, so this time I stayed on whatever it was as it wasn't quite as planned (although just as welcome). We were planning on having another, it just happened a little quicker than anticipated.

    Both are great with no health issues at all (and I hope beyond all else that that remains the case).

    My point though is that from the time I first mentioned it to rheumatology (who were incredibly understanding and helpful) to the time the first was born probably took 2 - 3 years, although I wasn't pushing it so could possibly have made that shorter if we'd wanted.

    Good luck!

    Ade

  • Hi. The answer to this is really horses for courses. It depends on how your body copes with mxt. I have been taking it for 14 years now and I know someone who has taken it for 30 years without problems. There are some people who can't cope with it at all but it sounds like you are doing well on it. Of course the fact that you want to start a family puts a totally different slant on things and I can't help you with that. You will have to speak to Rheumatologist. I don't know about RA but I know someone with MS who stopped her drugs to conceive and her symptoms were minimal during pregnancy (hormones play a great part in controlling symptoms apparently) and she went back on meds after having the baby. As they are both autoimmune illnesses maybe the same applies. All the best x

  • Oh yes I forgot - welcome to the forum. 🙂

    And keep a notebook with questions you have for your rheumatologist and take it with you. I think we all forget things in an appointment and even think of things as we go and have forgotten by the time our next appointment comes around. They won't mind you having a list of things you want to discuss.

    Ade

  • It is always good to keep a note as and when you have a question in mind and bring the note with you when you visit your rheumatologist. My suggestion is the same, talk to your rheumatologist and work closely with him or her on that. Below link with good information on pregnancy and RA and the drugs for your reference. I believe it helps.

    webmd.com/rheumatoid-arthri...

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