Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group need some info

Hi all my askick'in family. i went and had the MRI read and I have L 4/5 bulging discs and he said there was a cyst on one of them also a huge bone spur with arthritis in my foot, which he said was normal stuff for as. so he said he wanted to start me on sulfasalazine, but he wants me to learn about the drug and make a decision when i go back in 2 weeks let him know! I admire him for that, instead of saying try this and this and,,, none of the tests show you should not be in this much pain... yada yada
anyways FINALLY !
so everyone ...tell me what you know about this drug and how it did or didnt help you, side effects?
you all are great , thanks so much! i have learned so much from everone!

Cheryl (in utah)

share a smile!

I have been taking sulfasalazine for a few years now (along with others) and it seems to be working for me. No problem side effects other then your urine almost glows in the dark .

I also found that it does not work imediately and can take up to 6 weeks for it to reach it's full potential.
Sulfasalazine is a DMARD (Disease-Modifying Anti-Rheumatic Drug) and is usually used in conjunction with a NSAID (Non Steroidal Anti-Inflammatory Drug) like Naproxen (which I use).

It is also important to take a stomach protective medications with these drugs as then can and will be hard on your stomach, I currently take Nexium.
Hope this helpful.
Dan.

>>>>>>
We are kicking some AS*.

Cheryl,

I have been taking sulfasalazine for almost three years, and it does seem to help. It seems to especially help with peripheral joint pain. I have had no side effects to speak of other than mild loss of appetite when I first started taking it, and that was actually kind of nice. ( Helped with the diet efforts.) I agree that it can take awhile to start working, (sometimes up to 2-3 months), so don't give up on it right away. The only thing I would caution you about is be SURE to ask for enteric coated tablets. Most insurance plans cover this form of the med, and from what I understand this almost eliminates the possible GI side effects.

Good Luck!
Elisabeth

Hi,

Wow! Nice doctor. Actually realizes that you are capable of taking an intelligent decision.

Anyway, you wanted to know about sulfasalazine. I've been on it for a year and a half now. I started on a dosis of 2 grams a day. This dosis was not right for me and after a few months I took 3 g a day. This has been my dosis for over a year now.
EFFECTS: I haven't had a "real" flare since I'm on it. I still have pain, but it's nothing I can't handle. So I'm a "fan";
SIDE-EFFECTS: You need regular check-ups. There are side-effects, some of which are quite serious (check the site). The serious side-effects are rare and most of them are reversible. I myself respond well and hardly had any side-effects at all.
(o yeah! The pills are quite big and they stink (smell a bit like white spirit)).

Sorry for the messy post, but I really wanted to answer although I have thirty papers to grade and it's 22.30 here. Hope you understand.

Need any more details? Please just ask;

Good luck and a big hug.
Nele

Hi,

Take this with a grain of salt -- I'm the exception to every rule and drug warning. I took it for 5 weeks and am now very sick. I'm in bone marrow failure. They don't know if I was already having marrow problems and the ssz was the straw that broke the camels back (pushed me far enough to where the failure became apparent), or if the ssz did it to me.

Sounds like everyone else does well with it, and I must say, my arthritis did very well! I felt great!!! But bone marrow suppression is a rare side effect of the ssz. Don't take this as a warning against it -- just be careful, and be tested every 2 weeks (blood labs) so if a problem arises, you'll know fast and can get off it. My doctor didn't do the first labs until 6 weeks after I started it, even though standard written protocol is every 2 weeks for the first 3 months (you can find this on the drug website warning, and on the package insert).

Good luck,

Patty



Me at 5 . . . (Remember banana curls?)

Hi Cheryl,

I thought you'd like to know that Enteric-Coated Sulfasalazine has worked very well for me too. I take 2000 mg/day in combo with Voltaren. I've had no noticeable side effects and have been taking it for about 10-12 yrs now I think. I agree with the others that there is a ramp up time,.. for me it was somewhere around 2-3 months. I think it is a good plan to be on a disease modifier like this. Make sure to take it on a full stomach and to have your blood work checked regularly.

Good Luck in your decision making!

mig