Been diagnosed with rheumatoid arthritis a few weeks ago and starting methotrexate tomorrow which I’m starting on 10mg for 2 weeks then 15mg for 2 weeks then 20mg from there, also 5mg of folic acid the other six days and 5mg of prednisone for now but reducing it.
Do I need to worry about anything ?
Looking for general advice on both methotrexate and what I need to do and what to look out for in general.
I’d just say don’t look for problems it’s not for everyone but is commonly used here, USA etc. We are all different so take each day as it comes and give it time, often side effects if you get any are temporary. I found it helpful to take DMARDS at night but not sure if that would help you. I hope it works and I know it’s hard but RA is a long journey best undertaken with positivity and patience. X
You will read many stories of the side effects that come with it, but what you read isn’t a true reflection as those not impacted by it, aren’t on forums as much. I’ve been on it 7yrs, with no side effects, except hair thinning slightly, which settled down. I also take it at night, to sleep through any potential side effects.
Don’t expect miracles straight away, it takes 3 months plus to start really having an effect. Meanwhile you have the steroids till the MTX kicks in.
Once your on >20mg MTX your eligible for the COVID boosters. Hopefully you will find it helps, if not there are other options to explore.
Just run with it for the first few weeks. If still working you might find you need some rest days after taking it. I also found I had to eat carbs before eating it too. With all the drugs you have to see how your body adapts, as we all have a different tale to tell.
I thought after taking it I would need a good nights sleep and next day be ok but I needed 48hrs.
Good luck and at least you have a drug to help you on your journey from now on.
we’re all different and our bodies react in different ways to different meds. I was diagnosed with RA in 2004 and went on methotrexate quite quickly, with folic acid and steroids. I tried lots of drugs alongside the mtx but none of them worked for me until I got to a biologic a few years ago and then a JAK inhibitor. At the moment I’m only on the mtx, 6 days of folic acid and 10mg prednisolone, but I’m hoping for good things on Friday at my next rheumatologist appointment.
I haven’t had any side effects from the mtx. My one piece of advice would to try not to become dependent on the steroids. I’ve been on them so long I’m now dependent.
Have you been diagnosed with adrenal insufficiency, and issued an emergency injection kit? It’s important if you are steroid dependent and not producing cortisol that your under the care of an endocrinologist. I had a severe stroke due to an adrenal crisis, whilst taking 4mg of prednisolone. It was 3 weeks before my first endocrinology appointment, to discuss symptoms , as I already suspected I had some degree of AI.
No, no one has mentioned that at all
Sorry that was a reply to Helen. It only applies if you’ve been on long term steroids, as one of the side effects that’s not often mentioned is the adrenals atrophying., It’s not a risk with short term courses, although you should taper off, if you’ve been on them more than 3 weeks. It’s caused by steroids switching off the HPA axis, so that no acth is produced, which normally stimulates more cortisol to be produced. The body recognises you have sufficient cortisol from taking the steroids.
Thanks for your reply (if I’m the right Helen). I was diagnosed with adrenal insufficiency and am under the care of an endocrinologist and my gp is aware. I don’t have an emergency injection kit though.
That’s great, was just worried you weren’t under an endocrinologist. You should definitely push your endocrinologist or GP for an emergency kit. I’ve had to use mine several times, and it’s stipulated in the nice guidelines that we should be given one. This may help your gp prescribe it.
addisonsdisease.org.uk/Hand...
I’ve temporarily had to change my gp surgery because I’m staying at my daughters house since collapsing in May and my new surgery is rubbish so I’ll wait until I go back to my old gp, probably in January. I had to argue the case for my regular Vitamin B12 injection because the dr said I didn’t have low B12 - well he was looking at my latest blood tests and I’ve been having the injections for more than 2 years. They also won’t accept the results of my frequent hospital blood tests, insisting on doing their own even though all the bloods taken in Birmingham are tested in the same hospital!
Hi Alan I have also just been diagnosed with RA and been on Methorexate, and the Steriod Predisiline to reset my immune system which was going beserk. I was given a really good booklet published by versusarthritis.org/about-a... you can also find info here myrateam.com/treatments/met...
I have had no serious side affects so far although its early days , the blood tests taken this week have indicated that things are under control , I am experiencing very little pain , minor fatigue and sleeping and eating well.
Good luck and I hope the meds have a similar impact on your health
PS Also live in the UK
Hi Thanks for the message, good to know I’m not the only only just starting down this path and I’ll look at that booklet. I’ve just taken my first 10mg tonight as I was told to take about 8pm to help easy any side affects By my rheumatology nurse. I’m on 10 mg next week then 15 mg for two weeks then onto 20mg. My first blood test is next Thursday then every 2 weeks. Hopefully like you I have minimum side affects. Trying to live a normalish life just being carefull.
It’ll be nice to keep in touch to see who we’re going and help each other when needed.
Alan
Hello and welcome. Some good advice already but NRAS (the National Rheumatoid Arthritis Association) have a wonderful range of printed information and a helpline as well as this forum. I'm sorry you've had to join us
Hi Alan I also watched this webinar and thought you might find it useful nras.org.uk/resource/webina...
Well..it sounds like you are all set…..I found taking Mtx after dinner having drunk plenty of water during the day..meant I could forget about it until the next week.
Don’t overthink it & don’t fret over any side effect someone else had…we are all different…& a great many of us did really well on it for many years.
Good Luck…hope it suits you!
echo the “drink lots of water” comment. Can only be helpful to be well hydrated on MTX day.
Been good friends with MTX for 13 years now, with no problems.
I can only add that I was advised to split my 20mg tablets and take 4 after breakfast and 4 after dinner. It works for me but it's a very individual thing. Good luck 😊
Scalp itchy and other skin problems are thought by dermatologist to linked to 8 years on 15mg weekly MTX
Sounds similar to me when I started. Everyone is different but worked for me eventually with minimal side effects. At 9 months post diagnosis I was injecting 20mg MTX, folic acids 6 days. And 200mgs of hydroxy. After a further 3 months so 1 year post diagnosis I almost forget I have it. But it took 12 months and a few flares and medicine tweaks.
I am now 18months in and I’m only taking painkillers for a couple of days every couple of months. When it hurts it’s hurts a lot but goes again very quickly.
hi Alan I was terrified when I was diagnosed 10 years ago and refused to go on methotrexate at first as listened to all the bad vibes but started the injections after about 6 months of just being on hydroxycloroquine which wasnt enough on its own, best thing I did going on it took a while to take effect but what a difference it made to me, good luck
I’ve been on methotrexate, 20mg, for over four years now. It took a few months to work, but I’ve been in remission since. I get a few side effects, but nothing too bad and much better than active RA. Suggest you go with it and see what happens. Perhaps take it after a meal in the evening so, if you do get any side effects, you may sleep through them. hopefully you won’t. Good luck.
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