at least it's not lupus

[phaballa]

Now I'm sad that I refuse to give LJ any money, because I no longer have my House "It's not lupus" icon, which is finally appropriate! Oh well. The good news is, I don't have lupus. The bad news is, I definitely have rheumatoid arthritis

Comments

[quiet000001]

Hit me up if you have any mtx specific questions since I've been on it in total probably 2 years (maybe more, I forget), at varying doses. For your side effects so far:

1. MTX always kills my appetite the day after I take it - sometimes it actually makes me kind of mildly nauseated. (It's not actually like 'ew, I want to vomit' just kind of '... my stomach is not happy here.') One thing that helps me is to, for ~24 hours after taking the mtx dose, stick to fairly 'bland' foods. Not, like, totally tasteless, but no spicy stuff and no high-acid stuff like vinegar based dressing or a tomato-based sauce. Also, I take the weekly MTX dose either with a glass of milk (2%, not skim) or have a glass of milk later the same day if my stomach seems grumpy. Apparently MTX can be irritating to the stomach, so the milk helps act kind of to calm things down. (Other favorites - ginger ale and mint tea.) This does get somewhat better the longer you're on it, but I personally found the spicy/acidy food thing to always hold true. (Like, even if my stomach felt fine, if I went and had something spicy, it'd let me know it was Not Happy with me. But the rest of the week, spicy is no problem.)

2. For me, personally, as the dose increased one really persistent side effect was that the day after taking it, I'd feel knocked out. Like, that 'off' feeling you get when you're GETTING sick but not actually sick yet? Like that. Pushing on and trying to do really active stuff anyway seemed to result in vaguely tired/sore muscles for a couple of days after even if I wasn't THAT active, so I mostly just try to plan to take it when I can have a relatively low-key day the next day. (Y'know, puttering around the house instead of helping someone move. :) )

3. As you stay on it, your frequency of blood tests will probably decrease. At least for me, it was every two weeks at first (when they were working out what dose to use) then once a month (the routine frequency) then after a while of that, every three months or so. Which is nice just because it's annoying feeling like a human pin cushion. :)

4. From what I've read about MTX and sun/skin cancer, which admittedly does deal mostly with psoriasis and psoriatic arthritis, but anyway, the real increased risk problem is with a combination of PUVA and MTX - PUVA being a medication that they use that makes your skin way more sensitive to UVA, and then they shove you in a booth that hits you with a bunch of UVA. REALLY good for clearing up psoriasis, but combined with MTX - much higher risk of skin cancer, so - they do use the two in combination, but it's weighted against the risk. While I've been on MTX I *have* had plain old UV therapy (UVB, I think they are) and no one was super-worried about that, so. (Actually, its a combination that works exceptionally well for me.) Anyway, with all that in mind, my approach to MTX + sun would be more "use a good sunscreen and maybe a nice hat and sunglasses" than "OMG, I AM A VAMPIRE AND I WILL BURN UP AND DIE!!!!"

Um. I can't think of anything else right now. Except omg does it make a difference once it starts working. (I am not on it right now because my health insurance fucked up. I am not a happy bunny.)

[phaballa]

Man, that really sucks about your health insurance being fucked up right now :/ MTX is supposed to be one of the cheaper drugs for RA, but of course, that doesn't mean much considering the scandalous prices that some drugs go for. Like, my Adderall XR is $160 for the GENERIC, which is basically just amphetamine salts in an extended release capsule. That's crazy, considering they used to hand out amphetamines like candy. Now it's prohibitively expensive and a schedule 2 drug. I have to pick up a written prescription from my doctor every 30 days to get a "refill", which means I can't use the mail order program my prescription plan offers that lets you get 3 refills at a time and only pay for 1. Ugh! Anyway, yeah. Drugs should not be so expensive. Makes me wish I lived in Canada!!

I took the mtx on Friday, and I still have very little appetite. But I'm also on Adderall, so that probably isn't helping me eat. I might need to take it on Saturday evenings instead of Friday, since I play racquetball on Saturdays and I definitely couldn't this past Saturday after taking the mtx on Friday. Hmmm. I'll figure it out!

[quiet000001]

It's not so much the cost of the drug as the cost of the blood tests. If I start on it again they're going to be monthly for a while, and that runs ~$200 a set around here. (Or did last time I paid for it, anyway.) If they don't un-fuck my health insurance sometime soon my mom is going to make me sign up for another plan so I at least have emergency coverage and that'll be expensive, too. Grr.

Stupid health insurance.

I can't remember Mtx having a specific effect on my appetite beyond the nausea/upset stomach thing, but of course I was also more active (because hey, my joints didn't hurt all the time!) so it's hard to know if any weight loss was from eating less or just being more active. But eating something with it will definitely help how hard it hits your stomach (I forgot to mention that - I always take it after a reasonable meal. Not necessarily WITH, but while there's still some food in there to buffer things. Reasonable meal meaning something like a piece of meat and carbs and veggies rather than something like a big salad and some soup. Y'know, just something more on the side of 'stick to your ribs' type cooking than a light meal.)

Sunday was normally my day of 'splat' for me, too - I'd take it around dinner on Saturday and then by Sunday evening be feeling reasonable for any getting-ready-for-Monday stuff that needed to be done. When my class schedule was such that I had Mondays off too, I switched to taking it on Sundays so I had more of the weekend free, but - it's really down to figuring out when works best for you. (I personally found it made it made me a little mentally 'fuzzy' too - just in that way that being tired does - so I couldn't really take it on days that I had classes, but it may be different if you work and can have days where you just do routine mindless stuff that you don't really have to think about.)

The only other thing is the increased risk of getting sick - once you've had a few blood tests you should have a good idea of how well your white cell count is handling it (mine pretty much stayed in the 'acceptable' range, but depends on the dose and how your body takes to it) - but it's a good idea to just try to pay a little more attention to stuff like washing your hands when you've been out and about (specially during flu season, yuck) or using a hand sanitizer or wearing gloves, and try to stay away from people who are obviously sick and coughing their disease all over the place. Also, you should qualify while you're on mtx for the earliest set of things like flu immunizations (because you technically count as "immnuocompromised" and therefore in an at-risk group) although check with your rhumatologist about which vaccinations you're allowed to get. (I have this vague idea that there are some you shouldn't get while on mtx or another similar drug.)

Plus, of course, if you do get sick make sure to mention if you see a nurse/doctor that you're on methotrexate so they know to be a little more conservative with your treatment than if you were an otherwise healthy young person. (Not, like, put you in the hospital conservative, but they might decide to prescribe antibiotics or something a little sooner than they would otherwise, or ask you to come back for a check up or something.)

[quiet000001]

Oh, I was going to suggest, for eating more the day after - maybe try having more easy to nibble on type foods hanging around? As boring as saltine crackers are, they are easy to kind of absently nibble on while doing something else, and there are SOME calories there, so. Stuff like that always worked better for me. (Because of course, you're also feeling more run down, so you don't want to go to the effort of finding something to eat when you're not that hungry anyway... So low effort to prepare and eat foods are the way to go. :) )

[merryish]

I'm reading all this in fascination (and relief) because I'm probably going to have to start mtx next month and I've been sort of quietly freaking out about it. I'm bookmarking this entry to refer back to once I start - thanks for all the info! It makes me far more comfortable to hear from someone actually on it, instead of just a couple of doctors.

I have CADM (clinically asymptomatic dermatomyositis), which is an autoimmune thing with a bunch of skin rashes and, for me, no muscle involvement (knock wood). Since DM is made far worse with sun exposure, I already have to slather up with sunscreen whenever I go out, so that won't be a problem. Like both of you I'll be on one pill a week. Generally I have a cast-iron stomach, so I'm hoping I won't have a lot of nausea with it. :)

(My doc also wanted me to start taking contraceptive pills before I started mtx. We had a very stilted and polite conversation about it that involved him saying "No, you might have sex" and me saying "really, there is no reason to be concerned" to each other many times, each round louder and more insistent than the last, until finally I said "I ONLY SLEEPS WITH THE WIMMINS NOW OKAY!?" and his assistant cracked up and he blushed and was like, "...okay then! moving on!")

I've been on plaquenil for two months, and on varying doses of prednisone for about six months now (I'm down to 15 mg/day as of tomorrow, from a high of 40 mg/day two months ago). I did indeed get to take my flu shots early. As far as I know, the only thing you can't have is any vaccine that involves live virus, because you're too immunocompromised to ensure that you won't get sick.

One thing that's minor but worrisome for my vanity is, I've heard some people also have hair loss with it. Y/N? I have some to spare, but I wanna keep it!

[quiet000001]

You'll probably be on more than one pill - in my experience they prefer to start with smallish doses and work you up by increasing the number of pills (I ended up on six 2.5mg as my weekly dose, I think.) So don't be surprised if you end up taking a small pile of the darn things while they're working out what dose. (For some reason, they never switched me to a larger pill after deciding on a dose to stay with, but that might vary from doctor to doctor, depending on what dose you're actually on and so on.)

My stomach isn't typically that sensitive either, and it does still bug me, but like I said, eating a decent meal sometime before taking it and the milk thing seems to help a lot. I also make sure I have ginger ale or mint tea on hand. Like I said - it's not 'omg, misery' nausea, it's just annoying.

The contraceptive thing is pretty common because of the risk of birth defects and blahblahblah - although it also makes contraceptives less effective, so you still have to use some other method anyway, so I dunno about it as a rule. Like, there are medical reasons why birth control pills are contraindicated for some people, you know?

I never noticed any particular hair loss - though to be fair, in my case, I get psoriasis on my scalp that gets bad and the mtx helps with that, so I could be having hair loss but still less than 'normal' for me because my scalp settles down, you know? I also have a lot of hair (like, I get it thinned out every summer so I don't overheat) so I could probably lose half of it and still have 'normal' hair.

[phaballa]

Does it really make contraception less effective? No one told me anything about that! Although isn't mtx an abortifacient? I'd assume that if they don't want you to get pregnant on mtx, and they say, "You'll have to keep taking your ortho-tricylcin while you're on the mtx," then I don't really need to worry about it. I hope. Do not want flipper baby!

[quiet000001]

It does, and mtx is, but it can also cause birth defects (because it attacks quick-reproducing cells which is, well, basically what a fetus is) so I probably personally wouldn't rely on birth control pills as my ONLY method of contraception while on MTX, just in case.

[phaballa]

Mmm saltines. I couldn't finish my toast, but saltines might work! And thanks for all the advice. It really helps to talk to someone who's been through this sort of thing before.

[quiet000001]

I really hope it works as well for you as it does for me. It's not perfect - I still get pain from overuse of arthritic joints while I'm on it (like if I was a moron and went to a concert on a concrete floor in shoes with no padding and bounced around all night, my ankles and knee will LET ME KNOW in no uncertain terms how they feel about THAT kind of behavior) but it improves the daily pain and stiffness immensely.

Without MTX, I generally have to have some painkillers and aspirin hanging out with a drink by my bed ready to go in the morning so I can get up and get functional, because my back and wrists get really bad overnight. With MTX, I don't have to do that at all. (Plus last time, it seemed like my joints were actually starting to improve - like I have trouble running because my right hip will lock up weirdly and then suddenly refuse to hold my weight and I fall on my face, and that actually got a lot better after I'd been on mtx for a while.)

Oh, yeah, in case they didn't mention it - my doctors have always told me you're not supposed to take NSAIDs (advil, aspirin, etc.) with MTX as a general rule. (My rhuematologist had me on an NSAID for a limited time while the MTX was kicking in, but then cut it out.) So you should probably make sure you're clear about that kind of stuff - what you can have and what you can't.

(I always try to watch my intake of tylenol, too, just because it's pretty hard on the liver. I try to buy the regular strength instead of the extra strength, and then start out taking one pill and add a second if necessary, rather than just tossing back two extra strength ones as routine.)

Frozen fruit is another nice munchy kind of snack, particularly in the summer. (Though watch out for apples and citrus on post-mtx day; I prefer granny smith apples and they can be acidic enough to piss off my stomach.) But like those mixed bags that are frozen peaches and grapes and berries and stuff? Dump a few of them in a bowl and that's pretty nice.

I'm trying to think what other kind of stuff I tended to keep around for snacking on instead of meals. Breakfast cereal that I liked to eat dry is another one ('cause again you can just put the bowl someplace and grab a couple while you're doing something else) but that's more carbohydrates...

Um. Oh, if you're a dairy person, cheese can be good. Mostly the mild to medium strength ones that you can just eat as is without needing to put it on bread or a cracker. (Jarlsberg is my personal favorite.) Sometimes you can buy pre-cut up cubes for cheap at CostCo type places, so I'd do that and break the bag up into smaller baggies and put a bunch in the freezer (because of course CostCo bags of anything are HUGE) so then there'd be a baggie I could grab from the fridge.

I also tended to do a lot of more cream-based pasta sauce dinners on post-mtx day, because they're comfort food type things and go down pretty easily normally, and bland without being tasteless. So mac and cheese, alfredo, carbonara, that kind of thing. Even just pasta with a bunch of grated cheese sprinkled over it and mixed in. :)