ANA Titer 1:1280 pattern homogeneous and speckled o/w negative work-up

So the rheumatologist may be considering Sjogren's?

It takes years for many of us with symptoms, positive (even high) ANA to get a diagnosis. In my experience rheumatologists are mainly watching for internal damage to organs/brain and the rest of our symptoms is for PT and pain management.

I have a diagnosis of lupus and have high antibodies for scleroderma but have been watching and waiting for 25 years. I don't care about labels anymore. I can no longer take Plaquenil (something that might benefit you) and cannot tolerate even low dose steroids, and don't want to take immune suppressants.

The only benefit of a diagnosis is treatment with meds that I and many of my friends hope to avoid. Of course there is also validation involved. But it takes time for the diagnosis to become clear.

Clealry something autoimmune is going on in your body. Treating the dry mouth is a step. For pain I wonder if Plaquenil would help you. Otherwise unfortunately is is often a matter of watching and waiting. Is the rheumatologist seeing you in 6 months or a year?

He was considering Sjogrens but due to the negative workup that is no longer being considered. I don't care about a diagnosis either, what I do care about is treatment. Because I don't complain much rheum just keeps the label of glossitis unknown etiology. Took pilocarpine first day this morning. Because I work in the media field he was gracious enough to at least try and give my dry mouth some relief. Fatigue, tmj severe pain still an issue along with muscle aches but I am strong and will push through it. Just hope pilocarpine helps my mouth at the very least. I have a f/u in 4 weeks. Lab work up without an obvious cause of an autoimmune condition leaves me without the ability to be treated I guess until I get worse than I have been and it has already taken away from my quality of life.

The thing is @trspac what treatment would you feel is tolerable? Plaquenil tends to be tolerable but steroids are awful and various other immune suppressants bring risks and side effects. That is why I don't pursue treatment. If my kidneys start failing I will be more aggressive. It sounds like you are suffering more than I am!

@windyshores - Personally, if the pilocarpine works for my mouth I will be much happier than I am right now. I have lived with severe dryness for months which has altered my entire way of life. I am already small in stature so with the limitations with intake all I see is me dwindling away. I am strong so I will continue to push through but I a tired. I am eating motrin light candy. I just have more bad days with flares than good days anymay and that is frustrating for a person who has always been so active. I don't even know that my rheum will put me on pllaquenil seeing that all I have is a high positive ANA titer from his perspective. I will keep advocating for myself until I get better which is all I am asking for. Really appreciate your taking the time to provide feedback on this crazy journey of mine right now.

I have Sjogrens and it took numerous tests to catch a flare. My eyes went dry first, had to stop wearing contacts. I was referred to a Rheumatologist and he said I was “ borderline”. Then diagnosed with Antisynthetase Syndrome, still not a pisitive foe Sjogrens but my mouth was always dry.
Finally about two years into treatment I tested positive. I knew I had it but the tests are fickle.
Im now on IV Rituximab every 6 months with no dryness or symptoms unless I take Zyrtec for allergies then dry as a bone.
Mayo is your best bet or a reputable University Hospital with good rating for Rheumatology. I am moving most of my care to Mayo, pretty outstanding care, this coming from an RN.

@trspac my friend has negative testing but clearly has severe arthritis, and her doctor put her on Plaquenil. Maybe with your symptoms that will be prescribed. I hope the pilocarpine works!

@windyshores - since all rheumatologist do not have the same level of experience or education we are all left to the practice of medicine with every clinic visit. In my experience, most doctors do not listen to their patients. Every patient will not present like text. Autoimmune conditions are often misdiagnosed because one should not solely depend on labs but look at the big picture and take into consideration clinical symptoms. When I think about all of this, I am being sent back to ENT by rheumatologist for what exactly? I am so desperate for help that I am willing to go but all I see is lots of wasted money along the way. So frustrating

@cantek - I reached out to Mayo clinic yesterday. No one should have to wait for a flare to be given the diagnosis if clinically they are presenting with all the dryness. Rheumatology referred me back to ENT at a University hospital so I am willing to go just to get my foot in the door. Thanks for sharing your story. It gives me hope for future appropriate treatment. The dryness of my mouth is causing so many other issues with my oral health and rapid weight loss. My rheumatologist let me know he did not know what was wrong with me and my chart noted atypical symptoms. All this because the stress of all this has caused me to grind my teeth at night thus leading to tongue and cheek swelling with tongue sores because my teeth irritate the tongue leading to my diagnosis of glossitis unknown etiology with an ANA of 1:1280, wow just wow. I am my own advocate so will continue to fight for myself through this crazy process

@trspac I am reading a great book with some very dark humor about experiences similar to what you are having. Very common. But I do think many rheumatologists prescribe a med like Plaquenil based on symptoms. Maybe you could try a different rheumatologist. I see one who specializes in scleroderma. Maybe a Sjogren's clinic?

I get tired of being tossed around between doctors the way you are right now. I have bursts of trying and then I give up for a year or two. Hope you get a doctor to listen but ENT doesn't sound right for you.

@windyshores - I agree 100% that ENT is not the answer but trying to get my foot in the door and trying to be open minded and agree to the referral from the rheumatologist. Heck, they are the specialists so one would think they know best. Maybe I will get an ENT like my first one who knows better and provides me with the necessary direction. Just seems like if I clinically have symptoms with an ANA that high a rheumatologist would not just come to the conclusion of glossitis unknown etiology with atypical symptoms. So frustrating. I will take Sjogren’s clinic into consideration. Likely will end up with a university rheumatologist or Mayo Clinic. I try to be hopeful but I have my days. I will continue to push myself until I am no longer in control of course. Just know the odds of a ANA being that elevated with symptoms are not in my favor. Being tossed around like this makes me feel as if these docs don’t really care about me. Book name?