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!

Just had my second dose. I had to Google Melanie Martinez, and tbh I'd probably prefer the methotrexate!

Good that you had no stomach issues, but sorry that you're flaring. Can you do something nice, just for you?

Have you noticed any differences / improvement?

I ended up being quite ill last year/into this year and was signed off work for several months. I'm just trying my best to plough through and not relapse to that point. The thought of leaving all my exam classes in the lurch again makes me feel so nervous. I just need this MXT to kick in and make a bit of a difference.

No improvement yet. I think I'm in a massive flare too actually.
Also, I waited months for my 'urgent' rheum appointment and I was surviving on ibuprofen and now I can't take them with the methotrexate. And I miss them. So the pain is worse than ever Im hoping they kick in soon.

I hope you take a swift turn for the better too, @YouBelongWithMe ! It's horrible looking over the horizon and just seeing more issues, isn't it?

You can take the odd nsaid, if you look on Dr Google the guidelines suggest occasional ibuprofen or whatever is ok, not all the time though.

It can take a while to work - I was told up to 12 weeks . Have you got a rheumatology helpline ? Give them a call and ask about some pain relief that's suitable in the meantime, you shouldn't have to suffer for weeks until it starts working!

Op - contact your GP for pain relief. You should be able to take naproxen along with a stomach protector. It’s time to take control of this. My hospital has a nurse’s rheumatology helpline - I think most do. You can usually phone and leave a message and someone will call you back in a day or so. You might be able to have a steroid injection to tide you over until the mtx kicks in.
Ive got psa and I soon realised that it’s important to educate yourself really quickly on medication etc and then ask for what you want.
I joined a really good uk Facebook group for x psa and learnt so much especially about managing side effects of mtx, pain relief and how to manage arthritis.
Im now 4 years in and still on mtx but also on my 3rd biologic and omeprozole.

I called the nurse helpline. We don't get to speak to them direct, we just leave a message! I got a notification on Thurs to say they've got my request and will contact me back after speaking to a consultant.

I doesn't exactly inspire confidence that I get to speak tk anyone when I need it!
Oh, I did get a link to a quality of life survey so that was nice.

I'm also waiting on the answer to whether or not I can take steroids, as I think I need endocrinologist advice on that due to a past procedure.

My mum's been on Methotrexate for 30+ years for RA . The one thing you need to be aware of is it's interaction with other medication. You always need to let doctors know you are on it. Also, if you have an infection you may need to come off it for a while.

I've been on Methotrexate for 7 years for my RA, i inject 20mg once a week. I don't have any side effects, apart from fatigue after a few hours.

I am on other meds for the RA (Hydroxychloroquine) and I also have Rituximab infusions at hospital, as biologics didn't work for me.

My RA is aggressive and a bit of a bugger and does like to flare up. Currently in the middle of a flare now and having to take Morphine on top of my codeine, until the flare gets under control.

My colleague has had RA since the age of 35. She is 39 now and been on methotrexate all that time. Also steroids at first to calm things down.
She gets on with it well. You wouldn't know she had RA if she didn't tell you. She has to have her blood monitored every 3 months and can't drink alcohol but on the whole, it's been good for her. Don't get caught into the trap of reading everyone's bad experience online. For some they won't have a good experience but others do.

Thank you @Londonnight, @HelpMeGetThrough , @AutumnalNights those 3 experiences seem quite positive!

This week, I've STILL not been called back by the rheumatology helpline about whether or not I can take the steroids they gave me. I've chased and they just don't reply. That doesn't bode well for if ever I get an infection or am in a(nother)? flare.

On the other hand, the blood taking team, the radiologists have been super lovely. And I have an appointment at the hand clinic for next week too, and see seemed nice on the phone.

Has anyone else been to the hand clinic? Any experience of regaining lost function, or is it more to protect what I have left?

Ooh, another question, sorry!
Well, 2. Vaccinations.

Do you all get covid /flu / pneumonia jabs, and is it the GP who should be calling me?

If you have children, do you let them have the LIVE flu nasal squirt, or do you opt for the non-live flu jab?

Hi Zebra, I'm not on MTX but my 13 yo has been in the past (was diagnosed some.years ago, now on a different drug instead.). The day after was always pretty grim - like a hangover- but if she can do it age 8, you can too! She was always basically fine-ish after a big cooked breakfast.

Our other dcs always have the live flu nasal spray and she has the injection- we've never been told otherwise. Never any issues. Getting her to have the injection always needs arranging ourselves- for some reason she is always lumped in with the nasal spray lists at school and then we have to intervene. I guess it is worth checking with your GP. She also gets the pneumonia vaccine via the GP - this was specifically recommended by the rheumatology team iirc.

Great that you’ve got an appointment with a hand clinic! Wish there was one in my area
rheum nurse just gave me a link to hand exercises which was no use as you needed full hand movement to do them.

After years of inflamed tendons I’m losing function in some fingers and can see beg. of ulnar drift. I understand some permanent damage is inevitable but keen to do something that might help.

Now mxt is working and much less pain I’ve
tracked down a physio who specialises in rheum.hands and was able to self refer (still nhs though) and he seems really good, explained that I need to build up the wasted hand muscles after years of being unable to use them properly.
will be interested to hear how you get on at the hand clinic.

I get Covid and flu jabs - notified via the NHS app I think when it’s time to book. I don’t have children so no advice there!

I was diagnosed with RA as a child and was largely ok up until mid 30s. I’ve only recently been started on MTX and lasted 2 months on tablets before being switched to injection this week, due to IBS symptoms. I’ve also had to up the folic acid due to the hair loss. BUT, I can't believe the benefits. I felt an almost immediate improvement in pain, stiffness etc and made me realise how bad I was previously and what had become my norm.

Good luck with your journey. As others have said, everyone reacts differently so hoping you benefit too!
re rheumatology clinic - do you have your next appointment with the Dr scheduled? I think they usually like to see you a month or 2 after commencing meth.

Sorry to jump on this post, for those of you who take Methotrexate, how soon do you start to feel the side effects and how long to they tend to last for?

I am due to start taking it for psoriasis but I have a really demanding job and 2 young children, one of which has additional needs, there is always stuff we are doing on the weekend too, so I don't really have the time to spend every weekend laid up in bed every weekend.

I feel very scared about taking it 😢 x

Everyone has different experiences. Some get side effects and some don’t. My experience was side effects from the start but they got better because I learnt how to manage them.
also it varies as to how soon it starts to work, can be as long as 6 months but sometimes it can be much sooner.

Quoting myself like a twat:

So a few hours after I asked that question here, I thought I'd do an e-consult thing to my Gp surgery's reception. I did it after 4, so they'd see it on Monday...

And blow me, they called me back in MINUTES and invited me in this morning for a flu jab. And booked me in for pneumococcal in a few weeks time. But while I was there, they said I could have both, so I did. I need to call 119 for covid vax.

Am a bit baffled by the speed and efficiency as that has not been my experience with my GPS, or the NHS at all thus far! But pleased.

No, please feel welcome on this thread!
As you can see, I was v nervous about starting methotrexate. It will be my third dose tonight.

I have felt a bit shit the next day and the day after, but hangover-level shit, not too awful. And I've felt indigestiony for a good few days after, but manageable. I've been very tired but that could be the RA flare, I don't know. It's all very new to me and I don't really know what symptoms are from what.

I'd never heard of ulnar drift, but when I googled it, yep, I have that
I'll definitely come back and update after my appointment. I don't really know anything about it, at my 1 rheumatology appointment the Dr said would I like an appointment at the hand clinic. I said yes please. And now it is next week.

I am struggling quite a bit with loss of some hand function, and googling is pretty scary so I try not to. I can't do fists or thumbs up any more, which means even putting socks on it a bit of a struggle.

I'm really happy I'm in the system now but am gutted as in the 8 ish months between my urgent referral from Dr's and actually being seen by rheumatology, things have gone downhill fast. Yet I couldn't be seen sooner and couldn't even find a private rheumatologist to get to, albeit I only tried to go down private road a few months ago.

Thanks @TheSpottedZebra, that's really good to know. I can cope with a hangover feeling (will feel like my 20s again 🤣).

I am scared it's going to make me feel so rubbish I'll end up spending my precious weekends in bed. How many days does the fatigue tend to last? I drive a lot for work including some long journeys.

I'm not convinced it's the right medication for me but the consultant said I have to try this first before I can try anything else.

PS thanks for letting me piggyback the thread ☺️ x

I take dose three on Monday. I am quite tired, but have no nausea. No sign of it kicking in yet, but I know it's early days.

Dose 3 - done!

Hope yours kicks in soon, @YouBelongWithMe , and that you start to feel better.
I'm not feeling any better either. And I've still not been told whether I can take the steroids that I was given, although I have chased. I shall chase again, but I don't want to be too annoying...

I'm also having worse hair loss. It was bad before, but is worsening. Maybe I can take folic acid more often? And I've lost weight, it must be the icky feeling.

On the positive, my blood tests are fine.

So @Habbibu this is also your weekly chase to see if you have chased up your referral!