Methotrexate is probably the most discussed drug on this site. Makes sense: it’s the medication which most rheumatologists start with. There’s a lot of discussion here as well about the finer points of injectables vs pills. But most of all, people talk about the side effects they experience, and make no mistake about it, sometimes they are nasty. The result is that many people are terrified of even touching the prescription paper.
But here’s the thing: the people who start methotrexate and who have no side effects probably aren’t going to post a discussion with the subject line “Started MTX. Nothing happened.”. And the ones who start methotrexate and get a great response, where do you think they are? They’re probably too busy living life to hang around a support site, that’s where! And here’s something else we often forget: there are many people with this disease who have been treated (some with methotrexate) and who are doing very well. We don’t see too many of them here, as nice as that would be.
But don’t just take my word for it. Below, quoted with permission, are two recent posts about methotrexate which are great food for thought.
From member Michelle:
I have been on methotrexate about 9 years and it improved my psoriasis 100% when NOTHING, NO OTHER TREATMENT worked. Eventually, I got lucky enough to also have PsA and when I went on Enbrel, I did not stop taking mtx. I’ve been on folic acid since starting mtx, and my liver enzymes have been normal. I had an old school dermatologist prescribing the mtx, so at the 6 or 7 year mark he ordered a liver biopsy, and I had it done. Results were perfect. I am not afraid of the mtx, and some of the other treatments had far scarier possible outcomes. In the summer, I was able to decrease by a pill or two, and the rest of the year, 8 pills one day per week. No nausea. My hair fell out when I started, then grew back curly. I rocked spiral curls until the hair got less curly. I have all good to say for MTX.
And another from tmbrwolf329:
I also wanted to mention (even though it is somewhat off track) that I have been taking MTX for about a decade - first for psoriasis, then PsA, and Sulfasalazine for about a year. I’ve taken three different biologics without much success, though the Remicade seemed to be the best for me (can’t afford the cost of infusion anymore, so I’m not taking any biologics at this time). I know how scary it is to think about putting meds in your body that you aren’t entirely sure what they are doing - especially when they have such horrific sounding possible side effects. Keep in mind those lists are POSSIBLE side effects, not a guarantee that you will have them. I know that some combination of meds made me lose quite a bit of hair (both breaking and just plain falling out) even with folic acid supplements. Not sure what combination did it, but I truly don’t care at this point.
I was whining and crying and gnashing my teeth one day when my wonderful hubby gave me a hug and told me to suck it up. WHAT??? He simply pointed out that he would rather me be bald as a baby’s butt and not have further damage to my joints. He loves me however I look, he hates to see me in pain, and I needed to get over myself. So I sucked it up. Are there times when I wish I could have a few glasses of wine (and times when I have one or two anyway)? Yep. Even knowing that its probably a bad idea. Around new years I stop taking my MTX for a week or two so that when our whole extended family gets together for “Newmas” I can have a delicious and refreshing adult chilled beverage if I want > to. I get regular checks of my liver enzymes…and they have NEVER been elevated. Now I self-inject each week, and it doesn’t bother me one little bit. I tweaked my folic acid dose so now I’m taking .8mg morning and night, and that seems to take care of any and all nasty little side effects (my hair is super long now, but really really thin).
Everyone repeat after me: Fear the disease, not the meds. Trust me. Losing some hair, feeling queasy, feeling tired…it is worth it. After a while most of the side effects (if not all) will pass and you won’t notice them anymore. Meanwhile, every time your tummy feels like giving back what you ate for dinner, just remember an upset stomach won’t ruin your life…PsA (if left untreated) just might.
Thanks for those posts, Michelle and tmbrwolf. And thank you to our friend Moxie, who started the ball rolling with her interesting discussion.