The mystery of MTX

I wasn’t sure if I should start this or revive the many old conversations on MTX so here goes…. My Rheumy has been weaning me off of MTX so that I am now down to 5 mg/week from 25mg/week. He is quite confident that Rinvoq will do the job it needs to and that it is easier on my liver to get off of the MTX. In order to prepare for the 3rd Pfizer jab, he wants me off MTX for one week ahead and one week after and no Rinvoq for a few days before and after getting the 3rd jab. I just learned something…while I have been thinking that the Rinvoq is doing very little to help some of my symptoms, it seems that it has been working and it is the MTX that is making me feel like garbage more than the PsA! I’ve gone 2 weeks without MTX and I’m brighter, less fatigue and less joint pain. My overall “cloud” of being blah all the time is lifting. How the heck are we supposed to know if the side effects from the meds are causing issues or the PsA itself…or both, or neither! And, will I suffer from PsA progression quicker if off of MTX? BUT, there is always the possibility that I am just in a 2 week remission that has nothing to do with the above. Some things just won’t be known ‘till we get there but for now, I am done with MTX.

I have fog and fatigue regardless. I just went back on methotrexate about 6 months ago. No real change in fog and fatigue. I wish mine were medication related bc then there could theoretically be an end to it.

The truth is that i don’t think my current therapy is working particularly well. I’m on humira and methotrexate and still having a lot of issues. Ugh

Why the original decision to go off of MTX? @stoney, are you on the oral or injection form? I’m only a few years into this dance, it must be getting pretty old for some of you who have been on numerous meds.

I started it years ago as the next step after plaquenil. I was started on plaquenil first in large part because I was a nursing mom. My next step was oral MTX, which was awful. It did nothing, and I experienced 6 months of nausea. Eww.

When I switched to Humira this spring, it did well for a few months, but then I needed a boost. So I started the injections. That’s about a million times easier for me to take.

I hope it works well for you. I wasn’t offered the injections. My rheumy told me that the sooner I can get off the MTX the better. My blood work is excellent, no red flags but he seems pretty convinced about Rinvoq making MTX unnecessary and seems concerned about liver issues with MTX if used more than 4-5 years. But I certainly don’t want to go backwards in putting up inflammation road blocks. Are you eligible for JAK meds like Rinvoq? I seem to be the only one on this sight that is on it.

You shouldn’t if Rinvoq is doing its stuff.

I was one of those where mxt had me resident in my bathroom. Not knowing which end to aim at the toilet bowl. I told them if I had to continue it I would need to be in hospital as I had no ability to self care in that state. So mxt and I had a very short relationship. So mxt has never figured in my disease treament and I’ve done just fine on that basis. Read that again. It is therefore possible to treat this disease without having to have mxt.

I have a zero tolerance for brain fog issues too. I only suffer them with increased disease activity too thankfully too. But I would ditch any med that gave me added brain fog issues.

Yes, everything I have read suggests Poo is right - the MTX can work synergistically with other meds for symptom control, or it can prevent antibody development in biologics. There’s good evidence it prevents damage for responders in RA, but not in PsA.

As such, if it’s not providing either symptom control or prevention of antibodies, the option of weaning off it seems to make sense.

And if it makes you feel any better, next stop on the biologic train for me will likely be a JAK. The main reason I’m not there yet is because I always responded to anti-TNFs, so we are on the last of those before Rinvoq. At the moment, it’s honestly not working well enough, but there’s plenty other medically going on I’m trying to sort out too so it might have to wait.

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Time for an MTX update…
I am one month since taking MTX and feeling better each week. I really don’t know, but it sure seems like I have been blaming PsA for all my issues when some of them have been a bad reaction to MTX. Most of my fatigue is gone (lack of sleep still makes me tired) Because the pain is much less in my knees and feet, I barely have a limp when I walk. The heavy, oppressive cloud like feeling of wave after wave of aching and wondering how I will get off my chair is all but gone. My rheumy says that he has seen this before…at some point the Rinvoq seems to just grab hold and the MTX becomes more baggage than good. OR…maybe I’m just in some sort of remission. It’s hard to explain but I feel like a poison has been removed and my body is finding a harmony with Rinvoq that wasn’t there while on MTX. This doesn’t mean that I feel normal or great, just not so “knackered”! (I always feel special when I use proper English) In fact, I feel good enough that I am going to build a pill launcher and use my rejected meds for skeet shooting…they are a bit small but the orange coloured ones are easier to hit! Now if I could figure the random headaches that I am getting a few times a week…I suspect that it might be the Earl Grey tea that I drink!

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This made me proper laugh out loud! So glad to hear though things have improved. As you know I couldn’t hack mxt at all. Simply couldn’t function on it. Sadly because it can do such a great job for simply loads of people. However it certainly sounds like your body is happier now without it.

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Hey, guess what? I can still trigger my own flares! Feeling better than usual, I grabbed my chainsaw, a water bottle, some Moose sausage and headed into the bush to attack a tree with the zeal of a Canadian Logger in a plaid jacket! I split the frozen logs (they split very easy at -20C.) stacked them on my sled and headed back to unload. Fortunately, I ran out of gas about the same time as my chainsaw. It felt so good to work hard and feel productive. BUT…later while watching the late CBC National News, those deep aches began to sink in and within an hour I had to crawl up the stairs and had a rough night. Lesson learned: No more CBC news!

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That is clearly the proper take-home lesson. Nicely done.

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Clearly, you need to try the news on another channel :joy::rofl::joy:

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SC injection is the best way to take MTX, it skips the liver on first pass metabolism and combined with Folic Acid, really reduces the side effects, especially the total exhaustion and poopy problems that are common with oral.

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I was on mtx for almost 10 years. Going off it felt like a great grey cloud lifting from my mind. I still get brain fog and fatigue, but it’s usually a precursor to a flare instead of a constant. The change honestly took me aback, but I shouldn’t have been too surprised. My first dose left me nearly narcoleptic for a week (and I was in graduate school at the time! Thankfully it was right at Thanksgiving break but I still had to beg for extensions).

Yes, that explains it well! Were you on a biologic when you quit MTX?

I was. I think Taltz, at the time.

i just started mtx with skyrizi. what else can one use for the discomfort.
spoke to my doctor and he added a low dose of prednisone but i am missing my anti inflammatory

Remind me, why are you not taking your inflammatory?

the doctor told me you cannot take an anti inflammatory with mtx.

I won’t argue with your doctor as he/she should be your reliable source of information. I used Celebrex on an “as needed” basis 3-4 time a week while on MTX and Humira and again while on MTX and Rinvoq and while on Rinvoq alone. I’d suggest consulting with your pharmacist about the interactions. If monitored and aware of what to watch for, anti-inflammatories can be very helpful. I have on numerous occasions found the pharmacist info to be better than the doctor. Just some info to consider…but again, consultation with a professional is essential.