Well, I'm off to the races and am seriously apprehensive. All I can do is hope I'm one of the lucky ones who don't have bad side effects. I'm on 12.5 mg which isn't a lot, I know, but enough to cause many to feel bad. I don't know how I'll be able to deal with feeling bad two days out of every week. ; that's almost thirty percent of my life ! I don't really have any good choices, though, as my condition has worsened dramatically in the last month and I know I'll be crippled up if I don't do this.
So, send some good thoughts if you've got any extra laying about.
p.s. - how often do those of you on MTX get blood work ? I thought it would be every month (at least at the start) but I'm not scheduled for two months. Just curious.
Hey John, lots of people have no ill effects from mtx. Let’s hope you’re one of them! Are you on folic acid? (One member inadvertently called it frolic acid recently, conjured up all kinds of amusing images!)
I you do feel poorly on the mtx, there’s always the alternative of going with injections: that often solves the problem.
Think positive thoughts!
In the beginning, I got blood work everey 6 to 8 weeks. But now, after 11 years, I go for appointment with rheumy and bloodwork every 3 months. I get injections and take folic acid (2 mg), sulfasalazene, sulindac, and something for nausea and pain. Usually nausea lasts for about 2 days. But I learned from this site that if I stop the sulfasalazene for the day of and day after mtx, the nausea is not so bad, almost none. That has been a godsend. Good luck.
Oh, my mtx is 20 mg. I have horrible chronic fatigue and damage in hand and foot. Can’t walk very far without resting. And new lower back pain… Just trying to enjoy each new day as it comes. You will adjust and learn your best way of living the best you can. Sending good thoughts and hugs.
For me the day and day after have been the toughest. I started with pills and switched to injections. My increase was gradual, I highly recommend a gradual increase and hope that this is the standard. I also take Sulfa so as Pain mentioned, I don't take the evening or morning after sulfa and found this to help. I would contact your doctor if you have any issues as far a side effects. There were a few things I tried...increasing folic acid, switching to injections vrs. pills (it helped) and the last while we decreased the dose from 25mg to 20. I take the MTX in the evening after dinner. Drink a lot of water, it's very important to keep hydrated :-) Hope this helps and good luck :-)
jwm649 said:
Thanks everybody. I do appreciate your time and thoughts !
As an aside, I'm curious about when folks who experience side effects start to have them:
sorry...blood work every month for me. My liver has been fine over the course, my iron has been low, however it was low prior to starting the MTX. If you have questions regarding meds you can also contact your pharmacist.
Sending positive thoughts your way…don’t forget tablet form of MTX is not the only route for the med. I’m on 25mg subcutaneous injections weekly and find it easier that the tablets at that dose.
I do think too much and am overly-analytical so maybe I should try harder to just go with the flow (difficult for me to say the least !). So far so good re: side effects but of course it's too early to rule out ... (there I go again).
Sorry you can't enjoy a glass of wine or some cake. That's just really too cruel. I hope you have some other sort of indulgence you can enjoy. I think we all need an out sometimes.
I'm hoping for the best regarding the efficacy of the MTX as I have taken a fairly sharp turn for the worse lately and it doesn't look like a warm and fuzzy future if I can't find and effective drug. I'm trying very hard to be positive.
My best to you.
sybil said:
I know that Mtx does have side effects, wouldn't dispute that. However I think that the more you focus on potential side effects, the more likely you are to have them & quite possibly the ideal would be to be cloistered away from other people & the internet for the first 6 months of taking this drug, for that reason!
I took 25 mg for some time without any side effects (as far as I know, anyway - it's difficult to filter some of the weirder symptoms of PsA from possible drug side effects). Then, after reducing to 20 mg, I was convinced that I was getting 3 days of extra-bad insomnia plus fuzzy-headed fatigue for up to 3 days after taking the dose. I recorded it in my diary for a couple of months & it was a rigid pattern. Then, suddenly, the pattern shifted - I still had 3 or so bad nights & bad fatigue & fuzziness per week, but randomly. So I just had to let mtx off the hook and it & I are now very happy together.
In fact I find that a couple of glasses of wine (which is pretty much all I allow myself per week 'cos of mtx) or even a very large slice of delicious, moist chocolate cake can have a more unpleasant physical effect on me than this drug does.
Think positive and I hope mtx delivers very well for you.
No problem, a good wine merchant will know which wines are sulfite free. And then you will have to do scientific comparisons. One evening, one wine, the next evening another … repeat … take notes … then add cake … repeat … take notes.
LOL
sybil said:
Hey, I do enjoy wine & cake … lots & lots of cake (maybe that’s the problem!) … feeling a bit pants afterwards is a small price to pay! And thanks for the tip, lamb - I’ll give it a go if I can find the stuff.
