Managing methotrexate
October 7, 2022 2:14 PM Subscribe
For an autoimmune condition, I've just started taking weekly methotrexate. It's kicking my butt pretty hard. I need help figuring out how to manage this. Details and a few other questions inside...
I take .4 mL per week by subcutaneous injection right now. My dose is fairly low, but will go up to 25mg per week after some blood tests a few weeks from now. I'm also taking folic acid as a supplement because methotrexate interferes with natural absorption of it.
About me, in case it's relevant: I'm a single cis woman w/no kids, living with friends, middle-aged, slightly above average in weight. I don't drink (maaaybe one glass of champagne a year? If that?) and I don't smoke. I'm not on any other meds besides the mtx and folic acid (though I'm supposed to be taking iron; I don't usually remember to do it.) I can't absorb oral meds very well, so I can't try that as an alternative.
I'm looking for advice from people experienced with mtx (users, prescribers, family members of mtx users?) to share advice on how to handle it.
The day of the injection, I'm completely useless. Brain fog, exhaustion to the point of narcolepsy, zero attention span... the works. I'm reduced to one single brain cell, and I'm too tired to find it. This seems to start within minutes of the injection and lasts about 24-36 hours. It's better toward the end of that timeframe but still noticeable.
1) Does this exhaustion get better as your body adjusts to getting this medication every week? Or will I just have this period of nonfunctionality every week forever?
2) When my dose goes up in a few weeks will it get even worse? (yikes!)
3) Is it normal to start feeling side effects from the injection so quickly? I was thinking it was probably psychosomatic, but I have no real idea.
4) When should I take it to maximize my alert time? Right now I'm taking it Thursday evenings, because I don't work Fridays. That gives me a day to stare mindlessly at the carpet before the weekend. Would it be better to take it closer to bedtime on Thursday? Is that safe?
5) Is there anything I can do to make this period easier? Should I try to muscle through it? Should I pamper myself and rest quietly? Caffeine helps, but too much makes me jittery.
6) My one "vice" is taking a 10mg THC (delta 8) gummy to get to sleep several nights a week. Is this safe to resume? On my non-zombie nights I still have pretty severe insomnia every now and then. I found a lot of articles about how smoking weed on methotrexate is bad for you, but I don't smoke anything, I just eat a gummy and go to bed. I asked my PCP about it, and she said she was unaware of any studies about this, and gave me her blessing. But I'm a worrier, and I don't want to melt my liver.
7) I also can't take nsaids for the random normal pains of middle age, so instead I take tylenol. Maybe once a week? Is that safe?
8) Final weird question... why does my dosage switch from mL to mg when it goes up? I know .4 mL on my syringe is the "40" mark, but I have no idea what 25mg is on that same syringe that goes from 0-100. (Don't worry, I'll ask my pharmacist how to do it before my dosage goes up, but I'm just wondering why they do it this way.)
My usual prescriber of this medication is on maternity leave and her office is currently completely staffed by baby interns who can't even pronounce my disease; it doesn't instill confidence. Otherwise I'd go right to the source for info.
Any tips or tricks or suggestions for managing my new half-zombie lifestyle will be greatly appreciated!
I take .4 mL per week by subcutaneous injection right now. My dose is fairly low, but will go up to 25mg per week after some blood tests a few weeks from now. I'm also taking folic acid as a supplement because methotrexate interferes with natural absorption of it.
About me, in case it's relevant: I'm a single cis woman w/no kids, living with friends, middle-aged, slightly above average in weight. I don't drink (maaaybe one glass of champagne a year? If that?) and I don't smoke. I'm not on any other meds besides the mtx and folic acid (though I'm supposed to be taking iron; I don't usually remember to do it.) I can't absorb oral meds very well, so I can't try that as an alternative.
I'm looking for advice from people experienced with mtx (users, prescribers, family members of mtx users?) to share advice on how to handle it.
The day of the injection, I'm completely useless. Brain fog, exhaustion to the point of narcolepsy, zero attention span... the works. I'm reduced to one single brain cell, and I'm too tired to find it. This seems to start within minutes of the injection and lasts about 24-36 hours. It's better toward the end of that timeframe but still noticeable.
1) Does this exhaustion get better as your body adjusts to getting this medication every week? Or will I just have this period of nonfunctionality every week forever?
2) When my dose goes up in a few weeks will it get even worse? (yikes!)
3) Is it normal to start feeling side effects from the injection so quickly? I was thinking it was probably psychosomatic, but I have no real idea.
4) When should I take it to maximize my alert time? Right now I'm taking it Thursday evenings, because I don't work Fridays. That gives me a day to stare mindlessly at the carpet before the weekend. Would it be better to take it closer to bedtime on Thursday? Is that safe?
5) Is there anything I can do to make this period easier? Should I try to muscle through it? Should I pamper myself and rest quietly? Caffeine helps, but too much makes me jittery.
6) My one "vice" is taking a 10mg THC (delta 8) gummy to get to sleep several nights a week. Is this safe to resume? On my non-zombie nights I still have pretty severe insomnia every now and then. I found a lot of articles about how smoking weed on methotrexate is bad for you, but I don't smoke anything, I just eat a gummy and go to bed. I asked my PCP about it, and she said she was unaware of any studies about this, and gave me her blessing. But I'm a worrier, and I don't want to melt my liver.
7) I also can't take nsaids for the random normal pains of middle age, so instead I take tylenol. Maybe once a week? Is that safe?
8) Final weird question... why does my dosage switch from mL to mg when it goes up? I know .4 mL on my syringe is the "40" mark, but I have no idea what 25mg is on that same syringe that goes from 0-100. (Don't worry, I'll ask my pharmacist how to do it before my dosage goes up, but I'm just wondering why they do it this way.)
My usual prescriber of this medication is on maternity leave and her office is currently completely staffed by baby interns who can't even pronounce my disease; it doesn't instill confidence. Otherwise I'd go right to the source for info.
Any tips or tricks or suggestions for managing my new half-zombie lifestyle will be greatly appreciated!
I take 20mg of MTX orally each week and I experienced the same kind of symptoms (though perhaps to a lesser extent) when I first started a few years back. After a while, though, it didn't affect me so much anymore. So just from my experience with the oral version, you should eventually build up a tolerance so the side effects aren't so bad.
When I recently got the bi-valent COVID booster my rheumatologist told me to skip my dose for the next week but due to a timing mishap I ended up skipping two weeks. The next time I took it, it slammed me hard the next day. So whatever tolerance I've built up seemed to go away pretty quickly.
I can't speak to many of your concerns, since I take it orally and you take it as an injection, but I wanted to let you know that much, at least.
posted by roosterboy at 3:14 PM on October 7, 2022
When I recently got the bi-valent COVID booster my rheumatologist told me to skip my dose for the next week but due to a timing mishap I ended up skipping two weeks. The next time I took it, it slammed me hard the next day. So whatever tolerance I've built up seemed to go away pretty quickly.
I can't speak to many of your concerns, since I take it orally and you take it as an injection, but I wanted to let you know that much, at least.
posted by roosterboy at 3:14 PM on October 7, 2022
My partner was on it for a while, and my inclination would be to do it Thursday night if you definitely want to front-load the weekend with recovery. He did all his laundry-errands-workweek prep on Friday night and Saturday morning and then took the mtx at around 11am Saturday with the expectation most of the weekend would be lost from after lunchtime on. If you think Thursday evening would let you sleep through half of it and maybe only lose all of Friday but leave you relatively functional Sat/Sun, it seems worth trying it out.
posted by Lyn Never at 3:32 PM on October 7, 2022 [1 favorite]
posted by Lyn Never at 3:32 PM on October 7, 2022 [1 favorite]
Tylenol is generally not a good idea with methotrexate. Both can cause liver damage.
posted by sciencegeek at 5:21 PM on October 7, 2022 [2 favorites]
posted by sciencegeek at 5:21 PM on October 7, 2022 [2 favorites]
I don’t take methotrexate (yet) but I was recently diagnosed with rheumatoid arthritis, so I’ve been lurking on the subreddit for RA and I’ve seen a lot of questions about MTX side effects there. You might get some useful answers if you post to the subreddit for your condition, too.
posted by dean_deen at 10:06 PM on October 7, 2022 [1 favorite]
posted by dean_deen at 10:06 PM on October 7, 2022 [1 favorite]
Hi I had this problem! I took it for three or four months before my liver numbers started to head south, but before then I discovered I can't metabolise standard folic acid, I needed to get methylated folic acid. It's a genetic thing - some people lack some or all of the enzymes to add the methyl group, so you've gotta get a lab to do it for you. Methylated folate is not hard to get, and I have not seen anything that says it's worse for you if you don't have the gene variant, so it might be worth a try.
(And don't skip your bloodwork, the potential liver damage is no joke, and if you don't tolerate methotrexate, there are other drugs, many of which suck less!)
posted by restless_nomad at 4:38 AM on October 8, 2022
(And don't skip your bloodwork, the potential liver damage is no joke, and if you don't tolerate methotrexate, there are other drugs, many of which suck less!)
posted by restless_nomad at 4:38 AM on October 8, 2022
Been injecting methotrexate for about 5 years now. Never had any of the side effects that you mention. Sorry.
Echoing what others have said about your ALT and AST numbers going up. This was to the point that my GI docs were questioning whether I was an alcoholic. Numbers went down when they halved the dose.
About 6 months ago, my doc asked if I wanted to do oral methotrexate (out of nowhere). The self-injections don't really bother me, so I told them 'why fix something that isn't broken?'
posted by kuanes at 5:18 AM on October 8, 2022
Echoing what others have said about your ALT and AST numbers going up. This was to the point that my GI docs were questioning whether I was an alcoholic. Numbers went down when they halved the dose.
About 6 months ago, my doc asked if I wanted to do oral methotrexate (out of nowhere). The self-injections don't really bother me, so I told them 'why fix something that isn't broken?'
posted by kuanes at 5:18 AM on October 8, 2022
Former methotrexate user here (I'm on Humira now). I had a low tolerance for it and could only manage 7.5 or 10 mg orally a week. I don't work and just wrote off a day for fatigue/brain fog/nausea. My experience was that I worked my way up until the side effects were too bad and then stabilized at the highest level I could tolerate.
On top of folic acid, I also took biotin for nails because I already had additional nail issues. Also, while I have no personal experience with cannabis, I have a lot of anecdata in my larger friend circle about it being very good for relieving nausea. Best of luck!
posted by gentlyepigrams at 11:57 AM on October 8, 2022
On top of folic acid, I also took biotin for nails because I already had additional nail issues. Also, while I have no personal experience with cannabis, I have a lot of anecdata in my larger friend circle about it being very good for relieving nausea. Best of luck!
posted by gentlyepigrams at 11:57 AM on October 8, 2022
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posted by invincible summer at 2:27 PM on October 7, 2022