Changed to Methotrexate

[NannyNooNoo]

I changed to methotrexate from sulfasalazine last week - stopped the sulf on Tuesday and started meth on Wednesday. Now feel soooooo tired, and have so many sore joints 🤦‍♀️🤦‍♀️; probably niaively, I sort of thought that the transmission would be fairly smooth, my logic being that I was just moving from one med to another. But it feels like the sulfs stopped working already, and the meth hasn’t started yet! Just having a whinge, with a bit of musing whether this is what I should have expected.

[Boxerlady]

Sorry to hear that but it can take a while for the medication to start working and it's quite common to feel tired - at least at the beginning - with Methotrexate. Sadly, the fact that Sulphasalzine is taken daily - or twice a day - means that it probably doesn't stay in your system long whereas Methotrexate - being weekly - may last longer once it finally kicks in. This is me surmising, you understand, not an expert! 😂

[NannyNooNoo in reply to Boxerlady]

Thanks for taking the time to reply -you’ve pretty much said what I was thinking! Think I was expecting too much lol x

[Runrig01]

Unfortunately MTX can take around 12 weeks to reach therapeutic level, and sulfasalazine has a short half life and clears your system in under 48hrs. Did they tell you to stop sulfasalazine before starting MTX. They sometimes allow an overlap whilst the MTX kicks in.

[NannyNooNoo in reply to Runrig01]

Thanks for your reply - yes, they told me to stop the sulf before starting meth 🤦‍♀️🤦‍♀️. 🤞🤞meth will quick in fairly soon x

[stbernhard]

Hello Nanny, apart from what has already been said, I would encourage you to make daily notes of your symptoms. How your joints feel, tiredness/fatigue, swelling, pain and how it affects you mentally. This will be of good use to you and your rheumatology team to see if you are on the right medication. I always found keeping s journal an invaluable tool. I hop MTX kicks in soon.

[NannyNooNoo in reply to stbernhard]

Thankyou - I’ve actually been doing that, as I’ve found it useful in the past 👍👍

[cyberbarn]

I noticed no difference at first with MTX. I knew that they said it often takes 12 weeks to kick in, but I was getting fed up and thinking it wasn't working. Then one day not long after the 12 weeks I suddenly realised that I was feeling a lot better than I had the month before! It sort of creeped up on me rather than it being a dramatic improvement. So you will have to give it time I am afraid. I hope it works for you.

[NannyNooNoo in reply to cyberbarn]

Thankyou - I’m not a very patient patient 😂😂

[Harry_20]

it’s been my experience, each time I have changed meds, that I have had a nasty flare. Each med takes several weeks to be effective so, when I stopped metho and went onto Lefluminide, I could hardly move for a week or so and needed loads of painkillers. Then, when I stopped Leflum a year later and went onto Sulfasalazine, I ended up in hospital for a week, unable to walk without crutches and in severe pain for several months. That gradually subsided and, with months of physio, I got better, although I still take three different painkillers (Amitriptyline,, Pregabalin, and Tramadol) every day along with Sulfasalazine.

Recently, they have put me on a fortnightly injection of some biologic drug. I wasn’t asking for anything new, as I am OK with my body at present and able to do everything I want with it (including walking my dog for over an hour every day, swimming 20 lengths of my local pool, and playing table tennis weekly), but the consultant looked at my hands and said, ‘We can do better than this’ (they are pretty twisted and lumpy!). However, I was very clear when they suggested it: ‘I am not stopping Sulfasalazine until I am sure the new drug will be effective’. They agreed for me to have both for the present.

So that’s where I am at. Hope that’s at least of interest, if not of help. Good luck.

[NannyNooNoo]

Thankyou - that’s very helpful

[AgedCrone]

Was that what you were told to do by your rheumy team? If it was….then give it a good few weeks & see if you start to feel better.

No RA drug works that quickly …..just take things easy & get in touch with your team if things don’t improve after maybe a month or two.

You do understand you only take the Mtx dose once a week on the same day don’t you?

[NannyNooNoo in reply to AgedCrone]

No, it was my silly logic 😂😂; and yes, I do realise that it’s just nice a week - one thing I took a lot of time over was working out which day might suit me best - should have thought the swap through a bit better too: hey ho, live and learn

[AgedCrone in reply to NannyNooNoo]

I had several really good years on Methotrexate….in fact I honestly thought I was set on it for life…but one day it just stopped working & I moved on.

I hope you settle well on it. If you haven’t been prescribed the Folic Acid yet, & you feel a bit icky…., do straight away mention it to your Rheumy nurse…the FA can really help.

Look forward to hearing your success story.

[NannyNooNoo in reply to AgedCrone]

Thanks - that’s how I was on sulfasalazine for 11 years until it decided not to work with me on a full time basis! And yes, I’ve got folic acid Thankyou - now I just need a supply of patience 😂😂

[AgedCrone in reply to NannyNooNoo]

Just shows the difference in reaction to DMards.

For me Sulphasalazine was the worst drug from hell…I stuck it for 3/4 months …then my Rheumy took me off it He actually said I’d had enough!

[Sebastian247]

Hi there. I seemed to remember the mtx taking a while to work for me, and i needed the dose increased for it to work. Are you taking anti inflammatories like naproxen to help with the pain?I can empathise. I started leflunomide a month ago on a low dose (full dose starts tomorrow) and as yet there's been no improvement. I'm told it can take up to three months to work (assuming it does).

But my symptoms are pretty mild at the moment so I'm fortunate.

Hang on in there. Seb.

[NannyNooNoo in reply to Sebastian247]

Thanks, I take Zapain but only at night to help sleep - I also have fibromyalgia, so this med is a regular for me anyway

[Gottarelax]

Perhaps the sulfasalazine was doing more than you thought. A lot of people take both sulfasalazine and methotrexate at the same time...perhaps you could (with the advice of your rheumatology nurse) take both until the methotrexate has settled in.

[NannyNooNoo in reply to Gottarelax]

Thankyou - I have a follow up call next week, so I am keeping daily notes with a view to discuss having sulf for now as well as meth, but I don’t really want to have two RA drugs if I can manage in just 1 🤷‍♀️🤷‍♀️