zorkian: A picture of Oliver sitting up with his Dreamwidth onesie on! (Default)
Mark Smith ([personal profile] zorkian) wrote2012-04-05 11:10

medical update

Went and saw my rheumatologist again today.

* Got my right knee drained. 150cc of inflamed synovial fluid. Let me tell you, it's a weird feeling having the secret sauce drained out of your knee and then feeling all of the muscles and things starting to relocate to fill the void that suddenly appears.

* The sulfasalazine doesn't seem to be doing as much as we'd hoped, so he wants to start me on methotrexate too. This is exciting. Methotrexate is commonly used in chemotherapy to treat various cancers, rheumatoid arthritis (of which my ankylosing spondilitis is a relative), and to perform chemical abortions. WTF.

* Oh, yes, and I need to take a folic acid supplement because the methotrexate murders that apparently and can cause some exciting things to happen. Oh and finally, I am banned from alcohol while on the new drug. It's not like I drink much, but I do from time to time. Sadness.

That's the update, I guess. Now my knee is sore and I'm angsty and sad and angry and all the normal things after going in and learning that, yup, my body is stupid and broken still.

Good times.
yvi: Kaylee half-smiling, looking very pretty (Default)

[personal profile] yvi 2012-04-05 19:25 (UTC)(link)
Welcome to the MTX club, I guess :/ Try not to father any children while on it ;)

Oh, and expect sleepiness.

Hope your MTX-treatment goes well.

(Also took sulfasalazine at first, by the way. That just made me forget everything and sleep 10 hours a day)

Arthritis sucks. *hugs* if wanted
Edited 2012-04-05 19:26 (UTC)
yvi: Kaylee half-smiling, looking very pretty (Default)

[personal profile] yvi 2012-04-05 19:34 (UTC)(link)
Well, it's kind of hard to say with me because I have very infrequent but long-lasting RA flares. Only had 5 so far in 4 years and the last one was after taking MTX for 5 months.

But there's really no telling whether that would have been more severe without it or whether I would have had any more without it, so I'll just wait and see for a few more months. Especially since after 6 months I am now almost side effect free. Both the nausea and the sleepiness have almost gone - I just sleep an hour longer or so on the day after taking it and otherwise can do everything.

Taking both seems kind of unusual, but then I had to be taken off SSZ before even reaching the end dosage and never really wanted anything more to do with it.

Glad you are getting MTX, by the way. From my research it seems to be one of the best options for most people.
niqaeli: cat with arizona flag in the background (Default)

[personal profile] niqaeli 2012-04-05 20:29 (UTC)(link)
Well, I'd guess the murdering of folic acid is probably related to its use as a chemical abortifacient, since pregnant women are encouraged to take a folic acid supplement to support the pregancy.

Anyway, hugs if desired. Arthritis sucks. I hope the new med helps!
synecdochic: torso of a man wearing jeans, hands bound with belt (Default)

[personal profile] synecdochic 2012-04-05 22:17 (UTC)(link)
Arrgh, welcome to the "can't drink booze anymore" club. When we are at YAPC and OSCON we should try to find a Very Good Hot Chocolate bar or something. :)

stormerider: (Health - Needle)

[personal profile] stormerider 2012-04-06 04:07 (UTC)(link)
*offers hugs*

Hopefully I'm not being presumptuous by offering my experience here and covering some warnings you hopefully already know, but feel free to disregard it if I am.

The MTX you should be able to drink on, just not +/- 24hrs of taking the MTX... at least, that's what I was told, your doseage and dr.'s opinion may vary. I take... 6 pills weekly @ 2.5mg. [personal profile] nonny is on the sulfasalazine and MTX, I was put on MTX and then on Humira+MTX, now Cimzia+MTX. I actually had an allergic reaction when handling [personal profile] nonny's SSZ (she asked me to get it for her on a bad pain day and I ended up getting a chemical burn on my hands just from touching it), so they never put me on that (and I've been very cautious about other sulfa-related drugs since as well, like her sulindac). You may want to be careful with others handling the SSZ in case they're allergic to it as well (it's really powdery so it can be problematic. [personal profile] nonny is careful about how she handles it and the bottle so I can bring her the bottle if needed without problems).

The MTX is a gatekeeper for the higher powered stuff (such as the biological drugs); most of the insurance companies will refuse to cover the more potent stuff unless you've tried MTX first. MTX is old and very cheap, and effective for some people, so it makes sense for the insurance companies to do so. Especially since some of the biologicals work better with MTX than they do on their own; if you need to step up to those, then it's best you've already had some time to adjust to the side-effects from one strong medication before adding in another strong medication (especially so you know which med is causing the problems, too).

My experience with the MTX... yeah, it's definitely a chemo drug. If you're on it long enough, you can acclimate to it (I have, though it took me a bit). At first... definitely nausea, and flu-like weakness and negative energy levels. I take it on Friday nights; when I first started it would still run me out of spoons into Mondays, and I'd be recovered on Tuesdays. At this point, I'm mostly good, although I occasionally get really tired on the weekend (though that might be related to my sleep issues more than the MTX; it's a little hard to sort out what's a side effect from medication for one condition or a symptom of another condition). If the nausea is bad, you might want to ask for an anti-emetic like compazine or reglan (although a heads up on reglan, some people can get muscle spasms on it that mimic seizures. I didn't run into this personally but [personal profile] nonny did... seizure-like symptoms and temporary aphasia after the fact, very scary for us). I would not recommend phenergan as it's the anti-emetic with the strongest sedative effect and you're likely to be exhausted from the MTX in the first place. OTOH, if you don't get the exhaustion from the MTX, phenergan is a very kick-ass anti-emetic; best I've tried in the past. Compazine is what I'm on now and does the trick for me... the reglan stopped being effective for me, and I was happy enough to switch away from it given the problems she had. Ginger ale is also helpful for some folks, though it needs to be real ginger, not ginger flavoring (or candied ginger, if it's strong enough). Canada Dry is the only major brand I know of that uses real ginger, though I'm sure some microbrew brands will as well (if you buy organic or such).

If you're trying to manage a day job like I was, and seem to recall you are, I recommend taking it on Fridays so that you're as effective as you can be during normal business hours. Doesn't help when you're utterly exhausted and the pager goes off, however :-/ Not sure if you have a pager at your day job, but if you do and if you can, try to shift it off to someone else while you acclimate to the MTX, at least during your affected days. (And you might want to give a heads up to the backup sysadmin you have here at DW; I forget their username... been one of those bad brain days for me.)

Side note: remember that MTX is an immuno-suppressant. So when flu season runs around again, you'll want to get a flu shot if you can because you are now considered in the high risk pool. You will not want to get the mist vaccine as that is a live vaccine (which is very contraindicated for people with low immune systems); the injection is a dead vaccine. If you get a bad infection, you should also check with your dr about going off the MTX temporarily until it clears up, because the MTX can make infections worse. All stuff they probably told you, but important in case they didn't.