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

Hi,
I was talking to my rheumatologist about MTX last night. I've not agreed to try it yet so I don't have much advice.

I did want to say though that by slowing the disease down the pain will necessarily be reduced as a result.

I especially love one line in your post: "Moving is mostly just a good idea." Yup, been there: If you don;t mind I'll borrow it sometime. Please try to keep moving though, impossible as it seems, the more you move, the better you'll feel.

Best of luck,

    Loz

"Loving what is right is different from hating what is wrong and feeling right about it"- Roy Masters

Loz,
2nd dose is much better than the first. Still tired but more moving, thinking less. My ear already feels better along with some numbness and tingling around that area decreasing. A quick check on the net showed metho to be good for AIED. Hopefully it will work on the spine and other areas too. Good luck with your decision, it's a tough one. Lori

David,
Actually, I do notice some difference. My ear feels better. I get a lot of numbness and tingling around my ear and face on the rt side. The other pain is still around, but it's still early. I feel a lot more hopeful about it than I did at first, tho. I'm taking 1 mg of the folic acid. I notice it gives me a little heartburn, but eating fresh spinach with it seems to help that as well. Does the metho make your veins stick out?
Lori

hey, I've been given 5mg of folic!

this pain up the neck as well? in me it's the upper cervicals it can reach into the trigernmals as well.....nasty.............

David

David,
My neck and ear is where it all started. They thot I had trigemminal neuralgia (sp) in the beginning. Notice some of that pain and twitching under the right eye. Had a mastoid surgery a few years back which relieved a lot of that and restored my vision. Before surgery I'd stand up and tip over like I'd drunk a six pack or something.
Get a lump in my neck, (guess it doesn't show up on ct or mri) that causes a lot of pain and my lymphs tend to swell at the same time-but only on the rt. side which seems kinda weird. It's right in the middle of my neck on the rt side, don't know my cervicals, ect...
Lori

Hey. Couldn't help but read about all of you and the methotrexate. I took my first dose today, then read the warnings and got scared. But, it seems as if everyone has had pretty good experiences. I didn't know I wasn't supposed to take the folic acid the same day as the mtx pills though? Anyone care to tell me how I should be doing that? I took all of them together...I didn't know. THanks!

Dear Sam-you-are

Methotrexate inhibits folic acid synthesis, something necessary for DNA synthesis, which is necessary for rapidly producing cells. The cells that you hope to attack in AS are the overproductive immune cells that cause pain by attacking our own bodies. However, it isn't that specific, so other rapidly producing cells (hair follicles, mouth, GI tract) can also be affected - and this produces side effects (in particular mouth sores with MTX).

That being said - taking folic acid with your MTX dose can minimise the effect of the MTX. So, if you're going to take folic acid, take it 3-4 days away from your MTX (eg. If you take your MTX on Saturday morning, take the folic acid midweek). Some people suggest trying to take the MTX on it's own (to maximise effect), and only taking the folic acid if intolerable side effects occur. I was on MTX for over a year, at above the recommended dose, and had limited side effects, so went without the folic acid. However, that meant that I wasn't really responding to the MTX either.

Of course, these are just things to discuss with your doc. I would never recommend that you do something other than what the two of you have already agreed on.

Good luck,
Jeanna

Hiya,

good advice Strutsy...it's not a med you want ot be playing with......

I take the MTX on Friday evening, so i do n't take the folate Friday or until saturday evening...from then on I take it with the otherstuff in the morning.

I have noticed that the peripherals etc are much better through the end of the MTX week if I've accidently missed folate, rheummy says more is needed to cover the whole week! So we are upping some more....after blod tests etc

David

Wow! Thanks you guys. That was a really great explanation Strutsy, it helped me understand why I'm taking the folic acid. How long did it take for methotrexate to work for you? (Or anyone reading this post?) Or did you say you didn't really respond to it at all? Anyone who is reading, if you have comments about mtx I would love to hear them. I just don't know that much about it. I read a recent study (can't remember where) that said mtx hasn't shown that it really helps in AS patients. But I know I've read where it's really helped some of you, so maybe it was a biased study. I don't know. I'm giving it a shot. Anything is worth a try I guess. Thanks everyone!

hey all

i had mtx for nine months...crash horribly on sulfasalazine...terminal vertigo and malaise- allergy ?

since i've had just about every bad drug reaction in the books, rheumy#4 started me on 5mg and
insisted on daily 1mg of folic on the six days a week i didn't take the mtx (pretty standard).
the first four went down hard, left me woozey...feeling spunkless...had my blood work done...

i actually became a 'good patient'...doc upped the dose to 7.5 after six weeks, then 10.0 a month
later and then two months later upped it again tp 12.5...in the general scale of things, all pretty much
baby doses...i hated it...never got accustomed to the sick feeling and chemo tummy...glow in the dark.

but it worked...not as i expected, didn't bring any real peripheral relief, but the corkscrew in my
right eye stopped turning and almost went away...rheumy #5 termed its use a qualified failure.

20 minutes after my first enbrel shot...when we knew i wasn't gonna fall over foaming at the mouth,
doc said ' you can stop the mtx now' ...nicest words ever spoken by rheumy...my little heart just
jumped with joy.

my old primary care dr. said mtx was one of the most toxic drugs in pharmacology; he was
surprised i stuck with it considering all the other adventures i'd had .

just my two cent
best
alohaben