Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Methotrexate

Well, I've asked my Rheum to put me back on MTX after being off of it for a year. I take 10 mg of pred a day also. I recently had a bone scan of my spine, which was negative so I decided to increase my activity and take Tylenol for it. Wrong decision. A few days ago I woke up with scleritis which is now my 23rd bout of iritis and I have very severe systemic pain, mostly in my shoulders, neck, and back. The iritis is mild. But the other pain is so severe I've had to up my pred to 20 mg a day. I was on 17.5 mg of MTX before. The Drs. all tell me this is lupus, and personally I don't care what they call it, as long as I get some pain relief. What did people do before prednisone? I can't take Enbrel because of my history of lupus, although a woman on my lupus list is now on it for her psoriatic arthritis. I do get pain relief on MTX, although not total, and I can be more active on it. Yet I still need to take the prednisone. And a woman on the lupus list was trying to tell me how almost all back pain is psychosomatic. Not when it's with iritis, honey. Not when it's your 23rd bout of it.

Jane

aloha Jane,

i'm on methotrexate also...not all happy about this med...but i've had the residual iritis stuff with incredible
eye pain for years now...well the mtx seems to be helping my eyes...only thing that's actually helped.

dog, i'd like a beer.

aloha Ben

How long have you been on the mtx? How long is it 'safe' to take it for? I'm just past 3 years now so I'm beginning to wonder...

You can't always do what is comfortable. You have to do what is right.

hi batty,

i started the first week of jan this year...so it's almost five months...the first month was tuesdays and
wednesdays of semi zombie,glow in the dark-toxic, funky tummy...since then some weeks go down ok,
some headaches, some queasy tummy...after three months the cork-screw in my right eye started to let
up a bit, a month later i was writing 'mild inflammation in right eye' ...it goes up and down, which is a big
difference from the 'it's always getting worse' reality.

rheumy#4 said he expected relief in peripheral joints as well as in the eyes...t'aint happened yet.
bombed badly on sulfasalazine prior to mtx....you're just a young kid, do you have the eye stuff too?

sometimes i think i'm just a bad science project.

aloha Ben

they say it's safe to take until it kills you

Edited by alohaben on 05/25/04 09:29 PM (server time).

I have been on MTX for well over a year know, and no it has not helped. My ESR and CRP are still high, in fact MTX had no effect on them. And I am still sore.
I am 15mg of MTX, the only med that seems to work and only slighty is Indocid and it is pretty harsh. It allows me to sleep and gives me a bit of mobility in the morning.

If some one has not told you already, make sure you are taking folic acid while on MTX, if you are not, discuss it with your Rhuemy.

I think my Rhuemy is at the last affordable med MTX, and until the new DMARDs get put on the PBS.

Have you asked your Rhuemy about Remicade, it maybe OK with Lupus.

I am currently battling iritis, predinsone eye drops. Been fighting it for the last 2 weeks.

Take Care
Wayne

Hi,

Got a friend wo's been diagnosed with depression and that's why she gets hideous headaches and backpain trying to tell me that what I experience is the same.

I told her to get a new Dr!

David

Hi Jane,

Since you get some pain relief on MTX, can't you talk with your doc about raising the dose and/or switching to injections? I'm on 25 mg (which is usually maximum dosage) and tolerate it very well, although it only helps my peripheral joints plus other non-AS related stuff. Many people need doses of 20 mg and more in order to get decent improvement.

I know about a woman with lupus who's on Remicade for her joint problems, and one with lupus/RA overlap who's on Enbrel, although I don't know which other lupus manifestations they have. What about Kineret? It's a biological, but not an TNF-alpha inhibitor.

Can your doc give you cortisone injections in the shoulders, hips, SI:sand the worst peripheral joints?

Hope you'll get some relief soon,

Nina

Hi, my mother has been on it for probably close to 20 years now...got it when it was in "study" stage, she is doing fine (well, she definately looks like she has RA and stuff) but her liver and etc is good....she gets tested every 3-4 mos.