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

I was taking 2g of Sulfasalazine every day too. Mine was enteric coated though.
I just stopped taking it 1 week ago. I was talking to my rheumatologist about the infertility side effects because Im trying to start a family at the moment. My rheumatologist said it would be fine to come off the tablets while im trying to start family.
He said that I may notice that I will get sore again in a month or 2, so it seems that the drugs effects last a long time after you stop taking it.
I am following a LSD diet at the moment too, and I have always found that I needed to follow a LSD with the sulfasalazine to really lower my pain.
I will probably have to be stricter following the LSD diet now that Im off the sulfasalazine.
I dont take folic acid, however I have heard about it as a recommended supplement. I might try taking some of my wifes spare folic acid!

EDIT: I heard that the sulfasalazine restricts your bodies absorption of folic acid in your intestines, and thats the reason its a recommended supplement.
I think it lowers the risk of bowel cancer or something like that.

I was on SFZ, yes, enterec coated and took folic acid. Was sick as a dog - almost landed in hospital. Will bever touch that SFZ ever again. Horrific.

thanks

Hi Phil,

I've been on Sulfasalazine (EN) for about (?) 18 yrs now -- the first few taking 2000 mg/day, then upped to 3000 mg/day for the majority of my time on it (until adding a biologic). As I understand it, anything less than 2000 mg/day is not considered to be a therapeutic level for treating AS.

That your doctor suggested that you might be able to start lowering your dose, possibly means that he feels that your AS might not be 'active' enough to warrant continuing on the med long term if you can get by without it (risk vs benefit).

However, what should be understood about this medication is that it is not a 'take as needed' type of drug. It is not like an nsaid. It takes *weeks* to reach an effective (cumulative) level in your system, so my guess is that your doctor is suggesting you lower the dose (rather than stop) so that if your symptoms return, the time to ramp back up to a therapeutic level won't take as long. And if your symptoms don't return at a lower dose, then your doctor may further advise you at your 6 month follow-up.

If you are tolerating the medication well and feeling fairly well then perhaps the med is working, and since your doctor did not give you specifics re: a time frame or new dose, then I'd just suggest you wait, phone to clarify, or just be very cautious in not trialling less than 1.5 g (3 tablets/day).

(OTC) Supplementing with folic acid is not always recommended by rheumatologists since there is no general consensus on whether it's needed or not. The one rheumatologist I quizzed about it leans on the side of taking it, so I do!

Really glad to hear that you are doing so well - that is great!
mig

Im off my sulfasalazine over 2 weeks now. It seems like sulfasalazines beneficial effects might wear off quicker than I thought.
I have to say that Im beginning to notice the effects. My gut is more sensitive to starchy food since ive come off it. And im getting a few flare ups that are even affecting my ribs, that hasnt happened since I went on the drug over 2 years ago.
I dont think a low starch diet will be good enough without the sulfasalazine and i might have to go full No starch to see if that works.
Im going to stay off my sulfasalazine for a few months longer to see how I get on and also to conceive.

Im off the Sulfasalazine nearly 3months now.
And I havent really disimproved at all since finishing it. It looks like I may not need the Sulfasalazine any more for this reason. But it definitely did work well for me in the early days.
Also my fertility seems to have returned pretty quickly, maybe after 2 months, because my wife got pregnant a few weeks ago

Congrats on the pregnancy,that is great news. I love babies :), your first Christmas as a Daddy.

congrats!

Thanks Im looking forward to the new baby coming. All went well for the last few months since I was off the Salazopyrin but my stomach got sore in the last week and now Ive a massive flare up. Although I have been very lax and eating a lot of starch lately too. Back to the LSD now to get in shape before the baby comes