Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Darned methotrexate!

Sam, aloha

my rheumy (#5) called my use of mtx a 'qualified failure'...it WAS - however much i hated it - the FIRST
treatment that worked for me...it helped my eyes considerably...i had some bad muscle spams and
muscle weakness in my legs for a fair portion of the time on mtx...never helped with ankles of heels...
and my left hand had a lot of swelling and bruised very, very easily...DID NOT do one thing to help
control the fire burning in my butt and lower back...but the help for my eyes was much appreciated...

i went to a party in may of last year; and a friend had some homebrewed dark amber ale... i sniffed
but did not drink...the aroma of amber ale stayed with me for months, a growing thirst and craving lasting months.

one of our areas of consideration in stoping mtx, was whether the eyes would get inflamed while the
enbrel was getting started in my system...they didn't.

good luck, all the best
aloha Ben

Hi Sam,

I've been on MTX for almost 5 years. It has not helped the spine, but I've had some benefit in my peripheral joints as well as for some non-AS-related stuff. The regular DMARDs like MTX, Sulfasalazine, Arava etc, are generally not useful for spinal inflammation of AS, but may help inflammation of peripheral joints. I haven't had any side effects from MTX even at the highest dose, 25 mg. The non-spinal stuff and the fact that it boosts blood levels of Humira, which I also take, is the reason I'm staying on it.

Keep in mind that many of the nastier side effects listed for MTX mainly occur in the high dosages used for cancer (they use doses up to 100 or 1000 times higher than we do.

About your tooth pain, sometimes jaw pain can feel like tooth pain. I was so sure I had a huge cavity or a tooth infection that I even went to the dentist for a complete workup, but everything was fine. Jaw pain can also feel like an ear infection or when the muscles around the joint tense up, it can feel as if it'd be a sinus infection.

Could it be that you're grinding your teeth in your sleep from increased general AS pain rather than MTX?

Nina

Nina,
I bet you're right. I bet I'm grinding due to increased pain rather than a side effect. That makes much more sense! Also, I didn't realise that most of the side effects are only when on higher levels than we're on. Thanks! That eases my mind a little!

Also, Thanks to Ben for more input. I know you've had a lot of experience with most every drug out there, so I always like to hear your comparisons and opinions. Thanks yall!
SAM

Sam,

Your toothache could be an exposed nerve (as opposed to an infected one you'd get with a cavity). My dentist suggested I switch to sensadyne(sp) toothpaste, since it has an extra ingrediant for sensitive teeth. Its helped quite a bit. He also said the end of the nerve should deaden over time and fix the pain.

Jeff

Hope you get lucky with mtx. I'm about to start mtx this Sat, in conjunction with my sulfa. I'm really hoping mtx will work for me as my body is very picky about the meds it responds to. And I find enbrel to be prohibitively expensive.

bluboi

Thanks Jeff and Bluboi! I never thought of an exposed nerve. I guess it could be. And best wishes Bluboi. It's a hard drug for a lot of people to tolerate, but the first week is the hardest. I don't have any relief yet (15 days in) but everyone says it takes a while before it works...Good luck, and keep us posted!
SAM

Hi Sam
I know we have'nt met yet, so I'll take this opportunity to say Hello' Sam'.I don't make much of an appearance these days, but when I read post where i can offer something I jump right on in.
I have been on MTX for about 5 years or so, and in the beginning I did not notice much happening, except that I used to get the most painful mouth ulcers ever, which used to go right down my throat, I am not talking 3 or 4 I mean 20 or 30 at a time, I could'nt eat or sleep for a couple of days , horrible memories, but that has gone now, but it lasted for about a year, my dr gave me a soluble prednisolone to gargle and rinse around my mouth which would always help, never did find anything to make them go quickly. That was the only side effect i had from MTX. And I used to wonder if it was actually doing me any good, I take 20mg a week, btw, but only last January I saw my rheumy and he was asking if I felt any benefit from it, which I answered honestly and said 'No I did'nt', then he asked if I had any more flares of Iritis, which used to put me in hospital, which i have'nt for about 4 years or so, and then he said that it was probably due to the MTX, and so for that reason if no other I will continue taking MTX.
I know it is a worrying subject to a lot of ppl, but I reckon you will get the best help on the subject here. Hope you do get a benefit from the MTX soon, and the side effects do not hit you hard.

Thanks Paul!! Wow, so five years on mtx?? That's the longest I've heard anyone talk about staying on it so far. Do you take it in combination with anything else? And is your mtx in pill form or in injection? I've heard others say they feel that injection, even at the same dosage, is more effective. Have you had any experience with injection?
Sorry to badger you with so many questions, I just like to hear everything I can about how others deal with AS. You also mentioned side effects, did you have a rough time with the side effects?
Anyway, thanks for responding, and if you aren't comfortable posting a reply here, you are more than welcome to PM me. Thanks again so much!!
SAM

Sam
I only to glad to help in any way possible. really the onl side effects i had were the dreaded mouth ulcers, which I am glad to say i no longer suffer with.
I take the MTX along with folic acid, which I think everyone does, but only 6 days a week, not on the day I take my MTX, which I have chosen to be a Saturday, the folic acid is a necessity. I also take 90mgs of Morphine 2x daily and more when required, at the minute I am having to take about another 90mgs during the day. I have been in quite a bit of pain for the past 5 months now and I can't seem to get rid of it.
Any time I can be of help, if you don't see me around the Ka site, PM me.