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!

No advice but I am waiting for a referral to rheumatology for my psoriatic arthritis and I'm wondering if they will put me on metho. So I'm afraid I'm tagging on to your thread, but also wishing you the best of luck and I hope you feel a lot better soon. DH says his friend said it made a huge difference so I hope that's true.

So the longer version is...

I was diagnosed with RA this week. It was my 1st rheumatology appointment but I've been waiting for my urgent referral for 9 months. I was convinced I had RA due to my symptoms, which have been getting worse and worse. I was very keen to get my rheumatology appointment and get on with treatment.

But now I have my methotrexate, I'm terrified! Of the side effects, the future, of everything! I don't know why as I 'knew' i had it and I have been desperate for my appointment, but now... just fear.

I think I plan to take my methotrexate tonight. I have an easy day tomorrow and I've washed out my sick bowl.

Ooh, hello! Have you your date yet?

I meant to quote you before, @Habbibu , but my fingers are up the swanny...

No, but I've had a diagnosis for years. It was very stable for a long time and it didn't seem worth medication but since covid and various stresses in the family it's got a lot worse and on some days I find myself moving around like an 80-year-old lady. I was literally wondering today when I was going to get a letter from the hospital so I might chase the GP and make sure I've had the referral.

I have finger sympathy! I find myself dictating everything these days. So it does mean that you might find yourself with a message followed by some dialogue from Brooklyn 99

I was on methotrexate for a few months when I was first diagnosed with PsA. It was great for my symptoms and I had no side effects that I could tell but my liver couldn't tolerate it so I went onto something else. My dad has been on it for years though will no ill effects.

Have you got the folic acid to take alongside it?

I know it sounds stupid but one of the things that made me feel a bit more positive about methotrexate was standing in the chemists when a man asked for his repeat prescription of it (he was loud. I wasn't standing too close). He looked very well and happy!

I had a very similar experience when I was diagnosed with psoriatic arthritis.

Honest experience was that methotrexate made me extremely unwell. But I think my reaction was fairly anomalous. My friend has rheumatoid arthritis and she got on fine with it. She's much more mobile now and has a lot less pain.

Definitely chase, you may as well. Sorry for your recent stresses and hope your PA is back under control very soon.

Oh no, liver side effects? Poor you. Did you feel the impact on your liver, or was it a surprise when it showed up in your blood work? I hope you've found other meds to get it under control.

Yep, I have my folic acid to take. The day after I think, although some people start off 2 days after?

And some prednisone too as I'm in a flare I guess, but I have to hold off on taking that for a day or 5 while they check out something.

I was on Methotrexate for many years. Can't lie, felt awful to begin with, brace yourself! But eventually those side effects seemed to settle down. Most importantly, it kept my RA under control. 18 years on and I'm in remission and don't take anything. Best of luck

Stresses are much better, thank you. I suppose you can only find out how it is for you by trying out. I know it's a bit scary but if it does relieve your ra and you don't get too much in the way of side effects it could be amazing for you.

Oh no! What sort of unwell?

I've been googling like a demon and have read so many horror stories! And positive stories too. Good to hear it is working for your friend !

Good too to hear of healthy happy man in @Habbibu 's pharmacy!

Wow, remission hey? You're the unicorn! Glad you've had an excellent outcome (eventually).

So brace myself? I have my sick bowl washed and ready. What else might I need for my bracing?

Did methotrexate people find it best to take it just before bed? Or did that just mean no sleep?

@TheSpottedZebra I didn't actually feel unwell at all, it was routine blood tests that picked it up. I went through a couple of meds but I've been on biologics for a long time now, since 2012 I think and I'm fine most of the time. Some damage to joints from earlier flares but nothing too major. I find myself getting a bit tired but I also have a busy and demanding full time job, a small child and I'm always running all over the place!

Wishing you the best of luck, it's not easy but someone said to me that RA/PsA are diseases that rich Americans get and therefore there's always a lot of money to research them and find new treatments. Make of that what you will!

MTX is standard treatment. No one would choose to take it. No one would choose to have RA. Take it and knock the disease on the head asap. Attend all check up blood tests. While it works and for as long as it works, be grateful.

Ouch! I mean, I DID ask for honest experiences!
But a slap round the fa e is nicely invigorating, so, er thanks?

Do you have RA? Has methotrexate worked for you?

(Over the last couple of days my autocorrect thing has learnt to suggest methotrexate when I type m....e.... That's progress, right? )

So brace myself? I have my sick bowl washed and ready. What else might I need for my bracing?

Your bed - it can make you feel knackered!

Gosh that must have been a disappointment, but good that the checks are there. Glad you've finally got something that's working for you. Your story reads positively to my worrying mind, so thank you!

Are at rich American disease, but i get it!

@TheSpottedZebra It is a positive story I think! I first had symptoms when I was in my late teens and was finally diagnosed in my mid-20s. I'm 40 now and the disease hasn't really progressed at all. I've had some very bad flares, particularly after my son was born, but changing medication and some hefty doses of steroids have got me through them without too much long term damage.

I don't know how old you are - and I am not a very Pollyanna person by nature - but I do notice that a lot of people my age and a bit older really struggle with feeling like their body is falling apart as they get older and are getting lots of aches and pains. I don't really feel like that at all because I've felt that since I was in my 20s!

I only take 10mg of Methotrexate these days it worked well in the early months, then plateaued. Then I was prescribed Sulfasalazine alongside it, nasty huge horse pill that I reacted badly to and was taken off. I have spent the last ten years on sub cut Tocillizumab, which has been generally very effective but less so now. I feel quite ropey the day after Methotrexate, but just have to get on with life. I know a few people for whom Methotrexate has worked really well, my Aunty included. Don't down play how you are feeling to the HCP's, look after yourself, and learn to pace yourself. This is particularly important. Here's hoping you are one of the ones that it works really well for.

I'm supposed to be on it for Lupus but have been terrified to start it. Mostly because I'm very sensitive to medication and even have side effects with paracetamol 🙄 but I'm in the middle of divorce/selling house with an abusive man. I cannot afford to be extra ill until I'm away safely but unfortunately it's already been dragged out a year so far.

Please update how you are on it, it might give me some courage to call my consultant. Good luck!