I was on NSAIDS for about 20 yrs & for the most part they basically controlled my AS enough that I could live my life & raise our boys. However, about 4 yrs ago it all came to a screeching halt when my GI issues could no longer be ignored & I had to quit NSAIDS for good. My guts were so compromised I became quite malnourished & sick & there was about a 2 mo stretch where we didn't know if I would survive.

My guts are slowly, slowly recovering through diet & LDN, and my overall health has been making painfully slow comeback as well. However, I cannot tolerate any pain-killers at all anymore, not even Tylenol...and the AS pain is excruciating much of the time, and it is advancing at an alarming rate causing increasing disability.

Since you asked, my recommendations are-

1) If you decide to stay on NSAIDS for a while, pay very close attention to any gut issues/pain. Don't ignore it ever. Faithfully take L-Glutamine as it is said to provide some protective effect from NSAID damage.

2) Do some google research on LDN & then find a doc who will rx it for you. It seems those who have been recently dx with autoimmune conditions have the best chance of it working effectively, but even if it just works to some extent it's worth it not to have to deal with the side effects of other treatments. It takes a while to work (6-9 mos) but it is the best autoimmune treatment available & has very few side effects. It's usually not magical, but it has a high record of effectiveness.

3) Reconsider dietary solutions. You said they don't work, but there's a good chance you may need to tweak it or give it more time. I read about a low-starch diet quite a number of years ago & blew it off, thinking I could never do it. There are very few decisions in life I've regretted more. I never dreamed I'd be fighting for my life due to NSAID damage, and never dreamed I'd have to endure the daily levels of pain I live with because of not tolerating pain meds. (Oh btw, my gut can't handle many, many antibiotics either. It's an issue when I get sick.) Dietary changes are, like LDN, seemingly most effective in those who've had AS a shorter length of time. Even if dietary changes don't solve your AS issues, there's a good chance it will decrease your disease progression to the point where you can take less NSAIDS...which my experience will tell you is totally worth it.

4) I've never tried biologics & lots of ppl have good success with them. However, I'm part of a IBD forum & you can't believe the litany of bad experiences many, many on the forum have had & some of those side effects have resulted in irreversible damage. Biologics can be a lifesaver, but are indeed risky.

No question you have a tough decision on your plate & we've all likely muddied the waters more than cleared them. I wish there was a clear-cut answer, but there is not. All we can do is offer our experiences & sincerely wish you all the best...remember, you are one that has to live with the consequences of the decision you make- not us & not your docs, so trust your instincts for what is right for you. I don't know if you pray, but if you do you can ask God for wisdom.


AS 30+ yrs
HLA-B27 positive
Crohns (20 yrs of NSAIDS controlled AS but destroyed gut)
Chronic spontaneous tearing of tendons & ligaments; limited walking ability

Humira, LDN, LSD, L-Glutamine, multi-vit, vit d, vit c, adjustable bed, every pain patch and/or topical analgesic known to man, smile Nortriptyline for pain.