Diagnosed with RA this week... start Methotrexate today?

[TheSpottedZebra]

And I'm really nervous!

Please give me all your words of advice, or even your honest experiences!

I was on methotrexate for RA for about 2 years. It did improve my symptoms but unfortunately my liver objected. The worse side effect I had was a headache so I injected just before bed. I'm now on adalimumab which has been great.
Just make sure you keep up to date with your blood tests - I had no symptoms of liver problems - it was only picked up through the blood results . I was also advised to take folic acid tablets - not sure if that's still the case?
Good luck - I hope it works well for you 🤞

Yes, I'm worried about immunosuppression but I don't have any real contact with multiple strangers. It must be tough as a headache professional!

But as you say, if I don't take them, the progression and pain is pretty much guaranteed, whereas the bad side effects to from taking them are in no way guaranteed!

Supposedly treatment for RA (or maybe all AI things?) has one of the lowest rates of people taking the meds as prescribed!

Ooh, another story that sounds wholly positive!

Hmm, so I'm seeing a few patterns of snacks not meals the next day. Plainish snacks, like morning sickness type things?

I'm taking them at 9pm ish. Lots of water. Sick bowl at the ready. Clean bed linen on so I can grump about like a freshly scented hippo tomorrow should I wish. And - as my life is all rock and roll these days - I have saved Gardener's World to watch tomorrow to pep me up.

Gosh, you poor thing having gone through all that as a young'un.
Wishing you excellent quality of life now and eternal remission!

I'm on methotrexate and have been for about a year now. I started on the tablets but it made my IBS so bad. I was vomiting and going to the toilet multiple times a day.
I was then swapped onto metoject (methotrexate injections). I do feel sick the day after having the jab. I was told to take 2 folic acid on that day to help but I still feel so sick I can barely eat. I feel it's having some effect on my joints but haven't noticed a massive improvement yet.
The nausea isn't great and affects me badly that day after the jab. I struggle that day.

I was chatting to a lady in Rheumatology once who had been on methotrexate for 20 odd years and never had side effects. So I think it's just luck of the draw. Hope it works for you.

Hi @TheSpottedZebra my dd (11) has been on methotrexate for 6 years for an immune disorder although not RA. Just wanted to say that in all that time she has had zero side effects. She uses the metaject auto injector now and is on 11mg per week. It has been an absolute game changer for us.

When she is poorly her bilirubin levels do increase and she does look a tad yellow but her regular blood tests are showing she is very healthy.

For us the hardest thing has been managing the additional issues like chicken pox outbreaks and the flu season, or rather flu vaccine season.

I was on methotrexate for years for RA. Only issue I ever had was feeling sick, so I recommend taking it on a night that you know will be an easier day the following day. I was initially prescribed the tablet version, however I switched to the injectable version and this decreased the sickness. Good luck (:

Sounds like you're still struggling a bit. Have you told the rheumatologist that you've not really seen an improvement?

How long were you on tablets before you had to switch to injection?

Hi,
Good luck, I've been on mtx over 14 years with a couple of years off for pregnancy and breastfeeding (one child)
I find it best to take at bedtime and you can have either 10mg folic acid 2 days after or 5mg every day except mtx day.
Wipes me out a little and I have had some dodgy liver results a couple of times and come off it until better. Obviously immune system is weaker (currently have Covid for nearly a week) so I am just careful but can easily catch things.
It definitely helps with my joints- diagnosis swings between PsA and RA and I have a biologic as well.
Hope you don't feel too bad and it helps!

Ooh also I have the injections now because my rheumy decided a few years ago my body might absorb it better that way- an option if you do have gastro symptoms.

People that take tablets, do you use gloves or just hand-wash?

Hey sorry to hear your diagnosis and hope methotrexate works for you. I have quite bad psa and have been on methotrexate 25mg injections and also amgetiva biologic injections (3 years for biologic) for around five years. When I'm on them they do help a lot but I struggle to stay on them due to repeated lung problems. When you first start take a few days off work if possible. Methotrexate injections are much better than the tablet form. Both can make you quite sick and tired feeling to start with but these symptoms should go in a number of weeks. Drink plenty of water and make sure you take the folic acid on the days you don't take the injection. The best advice is to contact the helpline if you don't feel it's working or you become unwell. I find the rheumatology nurses really helpful. I'm always on three month reviews but the helpline can be contacted whenever you need it. Also you will get two week bloods and then monthly to check how your liver and kidneys are coping. I have found that methotrexate can affect your mood after being on it a long time so if that happens let them know but it does work. Sometimes the dose has to be upped. I'm on the maximum of each and get a lot of relief. Pain relief is also important and allows me to work whereas without it all I can't function. If you get a virus or infection you must stop them until it has cleared. Hope that helps and good luck x

From an immune system point of view? My consultant told me not to eat from a dodgy kebab shop but that was as far as I should take it.

No from a ohmigod the tablets are soooo toxic POV !

Most things I've read say wash hands before and after you touch the TINY tablets. But something else I read said use gloves!

I've just seen how small the tablets are. My hand function is so bad at the moment that I'm going to have to be so careful to not drop them. I'm dropping a lot at the moment!

I don't eat kebabs so that's a positive I guess!

@TheSpottedZebra Ah, I see what you mean I was confused because I didn't even realise you were supposed. I probably didn't even bother washing my hands!

Similarly I never used gloves or particularly did extra handwashing when taking the tablets, just shook them out like normal. Iirc they were 2.5mg tablets so I had to have 10 but small enough so easy to swallow 🙂

My hands were really bad when I first started, lots of cursing and fumbling trying to get tablets out of the packaging.
I once dropped 3 on the floor and only just managed to stop the dog eating them! Would have been even more difficult with gloves on so I would just wash hands after.

I took methotrexate for about 7 years along with 2 other dmards. I was started on two tablets a week and at fortnightly intervals was built up to the maximum. I had no side effects. I was scared too but the pain swelling etc was so bad. Keep up with the routine blood tests. Good luck.

I start MTX for severe skin issues. Am currently on cyclosporine but they won't let me stay on it for longer than a year. Am currently reducing Cyclo and introducing MTX on Monday, 10mg initially but moving to 15mg in four weeks.

Really interested to follow your experience as you're a couple of days ahead of me!

OK, 6 teeny tiny tablets taken.

Thank you all for the hand holds.

Have we list the edit function for some reason?
I wanted to add - I'm also sad about no longer being able to take NSAIDs, as they've got me through the past months. Farewell, friends.

Best of luck!! Hope you have no or very little side effects.

I am taking my teen daughter to a concert on Monday. I will need to take mine when I am back, about midnight. I can't be feeling nauseous or being sick on a train home from Glasgow 🤢

Ha, you'd blend right in, vomming on a train in Glasgow!

You can be my meth-mate. I started at 15mg (mcg?)

I've only been told 5mg of folic acid, 1x pw. But I guess that can be easily upped if I need/ the team advise.

Welcome to the MTX club! I know people struggle with it but it's been a wonder drug for me. I inject 25mg weekly. Started about 8 years ago (at a lower dose obvs). I've never had any side effects, only positives.

I had issues walking even before starting and now no one would know I had arthritis. Good luck I hope your MTX story is as positive as mine x