I have Sjogren's going on 22 years now--no lip biopsy, just all the symptoms (dry everything) and blood markers-SSA of 900 4 1/2 years ago, 366 now, even after daily Plaquenil (200mg, now 300mg).

I just convinced my rheumie to give me Low Dose Naltrexone. Too soon to say if it will help on the bloodwork, but I'm impressed so far. I have Peripheral Neuropathy and fibromylgia, among a lot of other ailments (notably, Lyme disease). Recently, I was in the midst of a major Fibro flare (leg pain through the roof). A couple of hours after taking the first dose of LDN, the pain dissolved..thank goodness! and hasn't reappeared. I'm also noticing that it is handling the PN, but not as well as the dextromethorphan did. (I backed off the DM to 15 mg to see if LDN could handle the PN on its own-it cannot.)

As for the DM, I've been experimenting with it for back pain, which I suspect is Ankylosing. It works fabulously! I was up to 150 mg before the LDN, now I've backed off to 60 with good results (going down to 15mg daily renewed the back pain, so I quickly went back up to 60mg).

What was surprising to discover was that the DM could handle the PN all by itself. I had been taking 50 mg Topamax for it with good results, but once the DM started handling the back pain, I stopped the topamax to see if I still needed it and was pleasantly surprised to discover I did not. I also found that I no longer needed the daily dose of Alleve to handle the tendonitis pain I developed in my achilles tendon and right elbow, or the twice daily Tylenol to handle the other aches and pains. Just DM twice daily (in the form of mucinex DM)--now once daily.

DM is totally experimental, but I find it beneficial. The LDN is also experimental--my rheumie really didn't know anything about it until I gave him an article explaining its benefits--but he was gung ho and I'm pleased so far, especially since the DM definitely does NOT handle full blown Fibro flare pain.