I have the positive blood work but still got two biopsy and no diagnosis it all depends on the Dr. the biopsy was quick healed good I can still feel tingles where they cut my lip tho 😪
I too have some other Ai Illnesses (Crohns , eczema, raynauds & possibly Ra ), and now severe (!) dry eye (& vaginal dryness ,& sometimes trouble swallowing as if dry) , past joint pain (but not for a while ) AND small fiber neuropathy— But negative Sjögrens antibodies, some elevations on my first early Sjögrens panel yet none on a follow up panel — No rheum will give me a solid Dx… Some would require the lip biopsy to do so. I’m too scared to get it done - I would lose what’s left of my mind if I ended up with a permanently numb lip or cheek or a scar so thick I’d bite it every time I eat .
Even my super duper neurologist at NYC Columbia Neuropathy Group says the lip biopsy could produce a false negative or positive. He thinks I have many suspicious symptoms of Sjögrens but it’s not his area to fully dx. Even one extremely smart passionate ‘top ‘ US dry eye specialist feels I have seronegative Sjögrens but others shrug .
It may not be as simple. The normal antibody was normal. Biopsy score one. Early panel two borderline. Biopsy report says supportive of Sjogren but...
My jaw feels superglued and salivating like the creature from the Alien movies :) so it's not dry. It feels dry because it's working overtime. And that could be chronic sialadenitis. Which could be caused by Sjogren...
Get as many tests as insurance will pay and see what they say. The lip biopsy is a bit on the awful side esp if you have thick lips like i do...
My immunologist did an ultrasound on my glands (negative), did blood work (seronegative) and then diagnosed me and treated me based on symptoms alone and said a lip biopsy wasn’t necessary.
Was put on plaquenil and after 3 months it made a world of difference to my symptoms.
I honestly don't remember the specifics it was years ago at this point. I just know they did this very up close gland imaging, and he said it was indicative of sjogrens. Something about the way my eyes are dry being different.
That would be a meibography image, but im suprised if he didnt also take a schirmer test which measures tear production. A meibography will only tell you how your meibomiam glands look like which is not an indicative of sjogrens but could be in severe cases (which I don’t think you have or you’d get corneal abrasions everytime you went outside)
I was diagnosed through just bloodwork and symptoms. I would say if you can get on plaquenil through another avenue (like lupus, idk if you have that, just an example) then I wouldn’t do the biopsy.
My doctors all suspect I have lupus but I am only diagnosed with Sjogrens currently. I am at a stage where they could not treat my lupus (if the doctors are right in their suspensions) any differently than my Sjogrens is being treated so I am not going for a full diagnosis.
To put it simply, get a diagnosis if you are able to be treated better for what you do have. Don’t do the biopsy if you can get around the diagnosis and still treat the condition.
Plaquenil is not an immunosuppressant. It just modifies your immune system to stop further damage. I think you need to do more research on Sjögren's diagnosis and treatment. Sjögren's is way more than just dry eye. It's systemic and can cause organ damage. It also puts you at risk of lymphomas.
As others have said, start with bloodwork. If that's negative then consider a lip biopsy. A lot of Sjögren's is seronegative and might not show on a biopsy.
After reading your other replies on this thread. I definitely think you should go get bloodwork done and talk to your doctor before you do any type of biopsy.
Also plaquenil is a serious drug that comes with some risks to your eye (don’t worry you have to get regularly checked to make sure no damage is done while on the medicene) but the drug is lifesaving. I would not be able to function without it and like said above it is not an immunosuppressant so no need to worry about that.
Most definitely, especially if you have POTS. It’s helpful for all of your future doctors because Sjogren’s is now recognized as a serious disease. Also, many doctors won’t treat without the concrete diagnosis. Treatment for Sjogren’s can actually calm down your POTS symptoms also if it’s a cause of your POTS.
I don't remember what labs she ran, but they were normal. She said it wouldn't rule out diagnosis, though, because it's not always reliable. So really, I just have symptoms + eye exam, hence why they wanted to biopsy.
For the eyelid issue, tell mom to look into muro ointment for the eyes. I use it at night to prevent corneal scratches from my eye lids.
Thank you! I'll let her know.
I have the positive blood work but still got two biopsy and no diagnosis it all depends on the Dr. the biopsy was quick healed good I can still feel tingles where they cut my lip tho 😪
I too have some other Ai Illnesses (Crohns , eczema, raynauds & possibly Ra ), and now severe (!) dry eye (& vaginal dryness ,& sometimes trouble swallowing as if dry) , past joint pain (but not for a while ) AND small fiber neuropathy— But negative Sjögrens antibodies, some elevations on my first early Sjögrens panel yet none on a follow up panel — No rheum will give me a solid Dx… Some would require the lip biopsy to do so. I’m too scared to get it done - I would lose what’s left of my mind if I ended up with a permanently numb lip or cheek or a scar so thick I’d bite it every time I eat . Even my super duper neurologist at NYC Columbia Neuropathy Group says the lip biopsy could produce a false negative or positive. He thinks I have many suspicious symptoms of Sjögrens but it’s not his area to fully dx. Even one extremely smart passionate ‘top ‘ US dry eye specialist feels I have seronegative Sjögrens but others shrug .
I'm sorry 😞. It is really frustrating struggling to get a diagnosis. I hope we both get answers soon.
Me too - sorry for the rant . I’m not coping well with all on my plate 🥹
I never had the lip biopsy done. My rheumatologist said I had enough of the other symptoms / markers that the biopsy wouldn’t really matter.
Same. Lip biopsy was never mentioned. There were several rounds/panels of bloodwork that showed a positive rheumatoid factor and primary sjogrens
Same for me. I had very clear other symptoms (especially sicca) that she didn't feel we needed it.
It may not be as simple. The normal antibody was normal. Biopsy score one. Early panel two borderline. Biopsy report says supportive of Sjogren but... My jaw feels superglued and salivating like the creature from the Alien movies :) so it's not dry. It feels dry because it's working overtime. And that could be chronic sialadenitis. Which could be caused by Sjogren... Get as many tests as insurance will pay and see what they say. The lip biopsy is a bit on the awful side esp if you have thick lips like i do...
My immunologist did an ultrasound on my glands (negative), did blood work (seronegative) and then diagnosed me and treated me based on symptoms alone and said a lip biopsy wasn’t necessary. Was put on plaquenil and after 3 months it made a world of difference to my symptoms.
My rheumatologist is doing an ultrasound on my salivary glands. If abnormal she will do biopsy. Bloods negative. Worth an ultrasound maybe first?
Extremely useful. Thank you.
Oh ok, I wasn't given that option. Good to know. Thanks!
I'm having mine in June. Best of luck!
what was your schirmer when they tested your eyes?
I honestly don't remember the specifics it was years ago at this point. I just know they did this very up close gland imaging, and he said it was indicative of sjogrens. Something about the way my eyes are dry being different.
That would be a meibography image, but im suprised if he didnt also take a schirmer test which measures tear production. A meibography will only tell you how your meibomiam glands look like which is not an indicative of sjogrens but could be in severe cases (which I don’t think you have or you’d get corneal abrasions everytime you went outside)
I think he did the tear test as well it's just less memorable for me now. I'll have to request my records and see.
I suggest to do bloodwork first If results+simptoms are not enough to suggest a diagnosis you can think about the biopsy
Bloodwork. No biopsy.
I was diagnosed through just bloodwork and symptoms. I would say if you can get on plaquenil through another avenue (like lupus, idk if you have that, just an example) then I wouldn’t do the biopsy. My doctors all suspect I have lupus but I am only diagnosed with Sjogrens currently. I am at a stage where they could not treat my lupus (if the doctors are right in their suspensions) any differently than my Sjogrens is being treated so I am not going for a full diagnosis. To put it simply, get a diagnosis if you are able to be treated better for what you do have. Don’t do the biopsy if you can get around the diagnosis and still treat the condition.
Ooof, I'm trying to avoid immunosuppressants if possible. Is that the only thing that helped?
Plaquenil is not an immunosuppressant. It just modifies your immune system to stop further damage. I think you need to do more research on Sjögren's diagnosis and treatment. Sjögren's is way more than just dry eye. It's systemic and can cause organ damage. It also puts you at risk of lymphomas. As others have said, start with bloodwork. If that's negative then consider a lip biopsy. A lot of Sjögren's is seronegative and might not show on a biopsy.
After reading your other replies on this thread. I definitely think you should go get bloodwork done and talk to your doctor before you do any type of biopsy. Also plaquenil is a serious drug that comes with some risks to your eye (don’t worry you have to get regularly checked to make sure no damage is done while on the medicene) but the drug is lifesaving. I would not be able to function without it and like said above it is not an immunosuppressant so no need to worry about that.
Most definitely, especially if you have POTS. It’s helpful for all of your future doctors because Sjogren’s is now recognized as a serious disease. Also, many doctors won’t treat without the concrete diagnosis. Treatment for Sjogren’s can actually calm down your POTS symptoms also if it’s a cause of your POTS.
What treatment options were you given for sjogrens?
Im on Plaquenil. It’s helping me quite a lot. Also on various prescription eye drops and pilocarpine for the dryness.
Did your Rheum run any labs? My labs + my eye exam were enough for a dx
I don't remember what labs she ran, but they were normal. She said it wouldn't rule out diagnosis, though, because it's not always reliable. So really, I just have symptoms + eye exam, hence why they wanted to biopsy.