I'm highly suspicious of it. I've never taken it for that reason.

I've seen the "success" stories, but we haven't heard any of the "failure" stories.

The best medical advice I ever got was this: Don't take anything until it's been on the market for at least 10 years.

So, I won't be jumping on that band-wagon anytime soon. I wish there was a "miracle cure" for all things auto-immune, but so far...I just don't see the evidence that it's safe and effective.

That's my opinion...for what its worth.

Hi,

I have just found a new Rheumatologist that specializes in sjs. I am so excited. According to her there is no magic pill for it so it is still treated symptomatically. She said they are doing some work in Europe on sjs meds and if one or some work and are approved then we will have them here also. I have sjs and osteoarthritis. I also have an RA factor of 9.6. The range for that is 0-13. I said I don't have RA so why would I have any factor at all? She said many people with sjs have an RA factor but it doesn't mean they have RA.

Hang in there. Maybe we will have a miracle sooner than later. I know I am thrilled that I found her. Someone who really knows what we live with instead of blowing you off with Fibromyalgia all the time.

Good luck.

Thanks for the comments. I will continue researching and speak to my PCP. I've ran across a few that didn't have full success or it waxed and waned until they got dosage worked out. I am interested in the new Rx's in Europe. Do you know if they are just treating symptoms or has anyone come across something to treat the cause of the auto immune cause. I know many are trying the Paleo or Gluten free but the gluten and partial Paleo is making my fatigue worse. I'm probably not getting nutrients and fat I need.

The Paleo diet made me worse, but I didn't find out why until recently: I have food allergies. Some of the things I ate almost daily I was highly allergic to.

So what do you eat? Did you go to immunologist and have food allergy testing done? I am not experiencing any GI issues just fatigue and my RLS is flaring up again, along with this new pain in knee joints and thighs - tingling or something. Sometimes mild and from 5 - 8 pretty intense. Take ibuprofren and get some relief. Already taking Horizant for RLS and clonazepam at night to "mask" RLS enough to sleep. But I don' t know if this new symptoms are consistent with sjogrens or not and since I don't have blood tests that show sjogrens I don't have official diagnosis of what is wrong with me other than all the drying symptoms and fatigue. All I know is I am declining and losing weight and no one seems to have any answers. Rheumy said pain in thighs wasn't auto-immune maybe refer to a Neuro (only 4th one I've seen for RLS in 18 months, 2 of which renowned medical teaching facilities Emory and Vandy... ???

She didn't offer much info on the research in Europe, but I got the impression it would be more than just treating the symptoms like we do now. And, when she said I may get my miracle yet, that made me think even more so that it may be something good and something that would fight the cause instead of the symptoms.

I think as far as diet goes, the only time any of them really help is if you have gastrointestinal issues. I have less trouble with RLS if I eat less carbs and believe it or not soap in my bed helps alot as well as Turmuric which is an Indian spice. Take 500 mg every night and haven't had RLS symptoms in forever. Once in a while if I don't keep my legs warm I will get some cramps but rare.

Howdy:

"So what do you eat? Did you go to immunologist and have food allergy testing done?"

My doctor first suspected food allergies. I had no inkling that I might have food allergies at all! They can cause inflammation and all sorts of other things.

blood testing is easiest

Yes I did try it. My rheumatologist wrote me a script for it. It was vey difficult though because I had to break the pills and dissolve them in water then draw up x amount of mls to take. He would not write a script to have them compounded for me. I did feel some better. More energy. My problem was that I had an increased ringing in my already loudly ringing ears. I think it is worth a shot for anyone to try. I have thought about trying it again. I think I have a record of my time taking it in my journal. Think I will go back and read it!

Hi .i don't know yet if I have SS.i do have severe fibro,myofascial pain,degenterative disc disease, IBS-Diareah ,RA,damaged leg,PTSD,depression and anxiety !i tried the low dis naltrexone ;compound )for fibro(as I will try anything )unfortunately it didn't work for me. I've attributed my dry mouth( that my teeth have rotted)and dry eyes to meds, but now I'm thinking I might have SS,will ask my rheumatologist .is there i specific test ?thanks

Yes, Lauren, there is a blood test. I think it's called: ANA:Titer, along with some other blood tests for auto-immune diseases.

Angee

My naturopathic doctor did the ANA test for me but the results were negative even though Im 100% symptomatic at this point including stomach inflammation.