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 it for 18 months, now on humira.

First few weeks felt v tired and spaced out then it started to work and all was fine for about a year. Did loads more exercise, lost weight. It really does work and I was mostly pain free. My liver was fine and I did have the occasional drink but not much and that was ok.

But after about a year I started to feel really poisoned by it and mentally sluggish.

So went to back to see the specialist and got put up to humira which is now - 3 months in - starting to be as effective without the fatigue and mental fog.

My specialist was quite blunt about it, humira is better but costs 200 odd a dose v 50p for a dose of methotrexate so that's where you start.

I'd say don't be afraid to go back and back again until you get something that makes you feel better but don't be afraid of meth either, the side effects seem to be very variable and it does work.

Hm, I'm a bit wary to tell you in case it scares you. But with the proviso that this is quite an extreme reaction, I'll tell you.

I literally had one tablet. Immediately I started feeling like I had stomach flu. Within a couple of days, I was in hospital with severe dehydration.

I slowly recovered over a period of about two years. I was admitted to hospital a few other times with severe dehydration too. To this day, I have anti sickness tablets on my repeat prescription.

So yeah - really not good. The rheumatologist wanted me to try leflunomide recently. I couldn't even pick up the prescription from the pharmacy, I'm that frightened of trying it. Two years is a long time to feel sick for.

But like I say, that probably won't happen to you. I think I had something pre-existing that it exacerbated.

I've been on methotrexate for RA for several years with no side effects, and it's been very effective. It's different for everyone, and obviously only you'll know how it works for you, but I'd crack on with taking it if I were you. (I was dreading taking my first dose too!)

I am going to woman up and take it, I promise!
Im just, er, internetting a lot first!

Yikes, you poor thing! Did you take other for those 2 years suffering or did it cause your to be sick for the following 2 years?
Are you medicated at all now?

Thanks for your experience. Im not even bothered by the no alcohol (or low) as I barely, barely drink so zero will be fine for me.
It's the feeling rubbish. Or the worse things! And just the general fear, you know!
And I really didn't expect to feel like this as I have literally been counting down the weeks the days to my appointment, and methotrexate is almost always the first thing prescribed. Due to cost /benefit I suppose!

No side effects... ever?
Ooh!

I've been on MTX for 7years for RA, PSA, AKS, Psoriasis, Initially side effects were extreme tiredness, disgusting metallic taste in mouth, and a bit of hair loss. Now I rarely get any side effects and I take it alongside another biolgic called err... Sterla I think. (It's new, my second dose this week).

I do my injections when I'm already in bed, then fall straight asleep and miss most of any issues.

Good luck.

I'll keep you posted.
I hope you reach safely and peace very very soon and you can soon start to focus on your health.
Do take care. Surely your health will be suffering anyway, so...

Thank you. Good to hear it worked for you for a bit, and hope you find something else soon. Good about your auntie though

Oddly i don't seem to have any AI family history -that i know of, anyway.

Make sure you are booked for regular blood checks, think its 3 monthly if i remember right

Im 47 (how did that happen?) and have had years of GPS saying it's perimenopause t me, until I had a brief phone tel with one - a locum I think - who listened.

And lordy, i am also far from a Pollyanna type! Hence me wanting to know everything that might happen so I can prepare!

Oh that's frustrating! While I think the focus on peri is a good thing, I do fear that, as happened to you, symptoms of other health conditions are being dismissed because it's 'peri'. I'm really glad someone listened to you and hopefully the methotrexate will kick in quickly. It was very quick with me.

I don't want anymore hair loss! I was having a bit (yay, peri) then I had a horrible bereavement some weeks ago and I lose soooo much hair each day. That bit honestly scares me!

Did you start with tablets then move to injection?
Hope the Sterla goes well for you.

Mine are every 2 weeks for 3 months at the rheumatology department, then if all is well, every 3 months at GP.

I 100% agree. It's great that peri isn't unspoken, but other things exist too!

Talking of peri, does anyone take hrt and methotrexate or similar things? Is that even possible? I'm not there yet, but I might be? And also, my hair is shit so maybe that will help!

I’ve been on it for 14 months. Everyone reacts differently, worth joining fb group Methotrexate Support if you can ignore the scare stories and focus on useful info.

Took over 6 months for it to start working but can be sooner if you’re lucky.

I changed to the injections (metoject) a few months ago because tablets giving me ibs symptoms. Much better now, just feel very tired a day or so after. I take inj on fri morning, feel fine all day sleep well, then exhausted and mostly reclining watching Netflix for one day over the weekend. Back to normal on monday.

I take methotrexate for RA, currently injections but previously tablets. I had no real side effects at all, switched as the tablets became less effective over time.

Same as you I was absolutely terrified to start them! I'm a health professional too, which possibly made it worse in terms of worrying about side effects and immunosuppression.

But as my consultant put it, untreated RA is guaranteed to make you feel unwell and progress, so you have to try something! It'll be closely monitored and there are lots of other options if you don't tolerate it.

Good luck and I hope you get it all under control.

I'm 43, have had RA for 4 yrs now and am on 25mcg of methotrexate a wk. Honestly it's been fine for me and definitely made an improvement for my RA, no major flares fingers crossed! Hope it works for you too xxx

I’m early 70s and have been on methotrexate for RA for many years, along with sulphasalazine and several other meds for fibromyalgia and other conditions. I take two folic acid the day before and have regular blood tests. I was nervous about taking it at the beginning but it has made a huge difference to my RA. I’ve never noticed any side effects but I have so many other aches and pains it’s hard to tell. I’m grateful to have been prescribed it as my father wasn’t lucky enough and suffered awful pain and disability from RA.

What is the slap round the face? Yes I have PsA and RA and have had for nearly 25 years. I took MTX in increasing doses until it no longer worked. I would very much like to have been able to continue on it and not have to take stronger medication that has higher risks and greater side effects. And I would be very grateful to be in that position.

I've been on it on and off for 20yrs. It can feel a bit bleurgh to start with but it works and you can always make adjustments. For example, injections get rid of any stomach side effects and I now take folic acid 6x a week, which knocked other side effects on the head. I can only tolerate 12.5mg, according to my blood tests, but I never felt any liver/WBC problems before bloods picked it up. I take a biologic alongside now and I'm symptom free.

I take it before bed and graze the next day as I can feel nauseous if I don't eat. That's it. I really grumped about taking it before I had kids but after I was desperate to get back on it as you don't realise how shitty the RA makes you feel until it's gone.

I was diagnosed with juvenile RA when I was three years old. Over the years, I must have been on every RA medication there is. As a young child I was on large doses of oral steroids which worked to control my symptoms but did have their own drawbacks, especially for a growing child. I was on Methotrexate and a couple of drugs as a teenager and had a horrific reaction to all of them. However, hitting puberty really caused my RA to spike and, until I reached my late-teens and my hormones began to settle, nothing seemed to work to control my RA, so it's possible my violent reaction to Methotrexate was partially due to other, unrelated health complications. I've been on a biological drug called Benepali for over a decade now and it has been wonderful. No significant side effects and my RA has been largely in remission since I began taking it.
All the best with the Methotrexate, I know it does work for many many people who have no issues with it. I know it must feel daunting haing only just received a diagnosis of RA and starting a new medication regime so I'm sending lots of positive thoughts to you. All the best.

This thread is a good find for me, would like some links with fellow RA-ers.

I've been on methotrexate for 3 years now, high dose 25mg and never had a single side effect. I'm so grateful for it. It's not enough to keep all the symptoms at bay so also on a biologic (I reacted badly to sulfasalazine too). Take the methotrexate and keep positive, you may well be lucky and feel fine. All the very best.

@TheSpottedZebra yes, I did about 6 months on pills then moved to weekly injections. I don't really find a difference in side effects with either but I still have to brace myself to do the metojec pen every week even though I've been doing it so long.

And yes to whoever said nausea - I always have snacks in for the day after.