Methotrexate not working anymore: I've been on... - NRAS

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Methotrexate not working anymore

14 Replies

I've been on Methotrexate for 34 years, and Celebrex for 25 years. Doesn't seem to be working anymore. Might need a 3rd back surgery. Not looking forward to that...

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14 Replies
Hellborg66 profile image
Hellborg66

Did the MTX work for that long? Might be going on it myself but that's a loooong time on MTX , hope you get some relief.

in reply to Hellborg66

Thank you. I'll let you know what the Rheumy says. See her tomorrow,

Yes, 34 years is a loooong time...when I got the JRA (1965), all there was is Aspirin!

We've come a long way, baby!

FrankieGus profile image
FrankieGus

Are you taking mtx orally or by injection. Orally - I found it very hard on my stomach health and started injection instead (which worked to impede the ra where orally didn’t). I then got onto natural anti inflammatories curcumin and 6000mg fish oil a day and weaned off non natural anti inflammatories which are also hard on the stomach. I focussed on improving my gut microbiome by eating whole foods, no dairy, no gluten, low sugar and eating fermented foods every day eg sauerkraut. Took a couple of years but ra pain is manageable and I am in lower dose mtx and completely off prescription anti inflammatories. The gut is the centre of the immune system - healthy gut - healthy me.

in reply to FrankieGus

Yes, been on .8 injectable about 4 years. Switched from Oxycontin to CBD for 16 months. CBD helps w/general RA. My pain is mostly from older joint replacements and esp. the 2 back surgeries, called "mechanical" pain.

Funny you mentioned the whole foods...we just started juicing (Ninja) w/whole food meals.

I'm very aware of our chakras and the gut being the core for good health. Looking into Tumeric and Curcumin, but won't help the mechanical pain, but I'll be healthier! I've had JRA for 54 years with over 33 orthopedic surgeries (8 joint replacements, some redone 4 times). My body is pretty worked over...but I'm still walking!

oldtimer profile image
oldtimer

I spent quite a lot of time looking at all the various other options for treatment before my last appointment. If you have good information, it's possible (but not always achievable) to have a discussion about future management of your condition. You then know what is available and your likely chances of getting that treatment in advance, so don't waste time in the consultation having that explained to you.

in reply to oldtimer

Yes, I used to teach the "Arthritis Self-Help" courses and have had JRA for 54 years now. I have the Drug Guide from "Arthritis Today" to assist me with my decision. Know what I noticed?...Zeljanz isn't on the list...was introduced 2012, but it's not in the current Drug Guide. Then I read that the UK prescribes it, but apparently it has some nasty side effects; heart type...maybe the Arthritis Foundation doesn't recommend it....

in reply to oldtimer

Correction...found Xeljanz under DMARDs...oops! thought it was a biologic. Yet, I did read some oppositions to it on the Mayo Clinic site.

nomoreheels profile image
nomoreheels in reply to

Just for info Xeljanz (tofacitinib) isn't a DMARD as we know them either, it's a newer class of med, JAK (Janus Kinase) inhibitors. It was only launched in the UK in June 2018, though has been available in the US since November 2012. Further... there has been new important safety info resulting from a clinical trial (March 2019) bnf.nice.org.uk/drug/tofaci...

in reply to nomoreheels

The Arthritis Foundation's Drug Guide 2019 has Xeljanz under DMARDs (Tofacitinib), page 9. FYI

Not taking, but interested in what "...important safety info resulting from a clinical trial..." was?

nomoreheels profile image
nomoreheels in reply to

If we take it to the nth degree all the meds we use to target RD are DMARDs... the ones we commonly call DMARDs (MTX, HCQ, LEF, SSZ) are csDMARDs or conventional synthetic DMARDs. What we know as biologics (abatacept, etanercept, rituximab etc) are boDMARDS or biologic original DMARDs whereas biosimilars (Amgevita, Benepali, Truxima etc) are bsDMARDs or biosimilar DMARDs . What we know as JAK Inhibitors (baricitinib & tofacitinib) are tsDMARDs or targeted synthetic DMARDs. So the drug list you refer to are sort of right in that JAKs are a DMARD but haven't separated them from traditionally termed DMARDs for some reason.

The important safety info for tofacitinib you'll find if you click on the link.

Hope this explains & doesn’t confuse further!

in reply to nomoreheels

The site stated that it’s only available in the UK 🇬🇧...That’s okay...

nomoreheels profile image
nomoreheels in reply to

Sorry, don't follow. Do you mean the link I gave states tofacitinib is only available in the UK?

in reply to nomoreheels

Yes...

nomoreheels profile image
nomoreheels in reply to

I can’t see where it states that, sorry. If it did it's not correct, as I said in my first reply it's available in the US, it was even before it was licensed for used here. This is the link again if we're at odds bnf.nice.org.uk/drug/tofaci... I gave it so you could read the recently added important safety information.

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