Hi en bloc. I still struggle with my neuropathy and lung conditions. Sadly, from the time neeve pain manifested, my body has "attracted" other health issues. My question right now is - what is the normal protocol for treatment (or management) if you only have the early biomarkers for the SS. I have 2 out 3 positive biomarkers. I do not know which biomarkers are because it was relayed to me by my eye doctor. She said that rheumatologists will not treat me unless i have positive SSA/SSB. I have been suffering for dry eyes and mouth for 6 years and my autoimmune panel including the SSA/SSB were always negative. I wish i can do away with the Plaquenil (i suspect this is the one that triggered my neuropathy) and the steroid (as this is bad for my NTM).
Thank you in advance for your inputs.

There are MANY rheumatologists out there that WILL treat sero-negative Sjogren's (those with negative SSA/SSB). Most will require a lip biopsy to confirm the Sjogren's...which is a good idea to have done anyway. It will confirm/deny the Sjogren's whether you are sero-negative or positive.

However, make sure you have the biopsy done by someone with experience (often not enough glands are taken, or handling isn't careful), and also that the pathologist reading the biopsy is also experience and uses one of the reputable scales for grading the sample.

I suggest you seek out a place like Johns Hopkins Sjogren's Center or another teaching hospital with a Sjogren's Center.

You could have sero-negative Sjogren's, so treatment protocol could be the same as anyone else with sero-positive Sjogren's...which includes Plaquenil, steroids, and use of biologics at times.

Those with just symptoms of dry mouth/eyes and a negative biopsy would typically require only symptomatic relief for eyes and mouth. But it sounds as if your Sjogren's goes deeper and may even be responsible for your neuropathy and other health issues. So best to get the lip biopsy and confirm the Sjogren's and determine exactly where you are at in the disease process.

en bloc, thank you for comments... the reason why i am concerned about getting the lip biopsy is because of many stories about the pain and the aftermath numbness in the area. I do not mean to downplay what most of us here have been through but for years now, my body is just so stressed with all the issues i have. Right now, i have no access to big hospitals with sjorgrens center, except the Shands in Jacksonville and Gainsville. I will check if they have one. What is "biologics"? I do not want to take Plaquenil, i strongly suspect this is the one that triggered my neuropathy. And I should not be taking steroids because of my lung issues. What is the worst scenario if I just leave it at my current situation, no treatment, just manage my dry eyes which I have been doing for years now? Thanks again.

There are a few people who have negative experiences for every procedure out there...lip biopsy is no different. You are not hearing from all those who had a normal experience without any complications. Most people do just fine with the biopsy, but any time you cut into tissue, you can severe small nerves. The numbness left by this in such a small area where the biopsy is done, should not leave you lasting problems. I had a small bump and minor numbness after my biopsy, but it was localized in a very small area and certainly wasn't anything worth complaining about. This is also why I stressed getting someone with experience to do the procedure.

ALL (and I mean ALL), drugs have potential negative side effects. The impact on people varies...some experience nothing, while others cannot tolerate some drugs at all. There is no way to tell how a drug will effect you unless you try. There are some new tests out there to determine if you can tolerate and metabolize certain classes of drugs, but they just give you an idea of whether you might be at risk for side-effects, etc. But always good to have more knowledge so you can make better informed decisions.

Biologics used today include Rituxan, IVIG, and other immune suppressing drugs. Plaquenil doesn't usually have an impact on neuropathy...doesn't help it either. But everyone is different and just because most people are not effected by Plaquenil (in regards to neuropathy), you may be different...the one in a million who gets something horrific from taking it. Sjogren's by itself causes neuropathy, so you may have it just from having the Sjogren's...and it showed up at the same time while taking the Plaquenil. Who knows. But you have it now, and need to find the best course of action for YOU.

Hi Idiopathic PN,

I always have to put in my oar when it comes to 'autoimmune conditions' and measuring whether or not they exist using 'the tests we have, not the tests we need.'

I have a host of 'conditions' which always seemed to be autoimmune EXCEPT I never ever measured positive on any test (passed up the lip biopsy because it didn't want to be bothered).

From infancy until my late 20's I had severe eczema, infections and respiratory problems.

When other conditions came along I treated the symptoms. "Sjogren's came first and I took Pilocarpine or Evoxac for my dry mouth dry eyes, and NSAIDs for the generalized myalgia. My Rheumatologist told me to treat the symptoms and not worry about accurate diagnoses.

Next was Interstitial Cystitis which is a inflammation of the lining of the bladder and occurs in about 50% of people with Sjogren's (which of course I don't have) That diagnosis followed two years of constant UTIs, and the UTIs continued until I began taking D-Mannose daily. I've been UTI free for 5 years.

Meniere's took some of my hearing and I also developed Anemia. I have several problems with my esophagus which are autonomic neuropathic in nature. As well as sudden blockages of my small intestine, producing horrific pain and hospitalization until the blockages spontaneously cleared.

Then profound peripheral neuropathy (I cannot walk without braces and a walker).

This was followed by a diagnosis with CVID (Primary Immune Deficiency Disorder) came next. I have IVIG every four weeks, and my constant infection/illnesses stopped.

AND my Immunologist explained that all of my 'conditions' were the result of my Immune System attacking my organs/systems, but NOT with auto- antibodies, probably with cytokines (but not known for sure).

Then I developed Small fiber neuropathy (3600 mg of Gabapentin stops the 'skin on fire' feeling).

And recently Small airway lung disease (common for those with CVID).

I have more and more gastric issues, including sudden onset of IBS.

I had a year of seizure like episodes and collapse to the ground, which seems to have left as mysteriously as it started!

So, bottom line. It is what it is. Immune Disorders often come in clusters.....

Regards, ElaineD

I am sorry i could not reply sooner...i was rushed to the ER during the weekend.
Thank you so much, en bloc for presenting the facts as it is. In the case of my active lung infection, the effect of the steroid is not something that may be considered as potential, it is with certainty that the infection will get worse 😔. It is something that i need to weigh myself... thank you for your inputs..i truly appreciate it. Sometimes, it is too much to take in, i need someone to rattle me with some hard facts. Thanks again.

Hello ElaineD,
My situation has some similarities with yours. Since childhood until early college, I had severe asthma and proned to bronchitis. I was told that i had exzema when i was a baby. I was diagnosed with Meniere's in 1983 which i still have until now...they just call it Vertigo. In fact, i was rushed to the ER during the weekend for severe dizziness and vomitting. I had a surgery on my lacrimal gland 7yrs ago. Back then, my eye doctor had me tested for sjorgrens but since it was negative, that was the end of it. My dry eyes and mouth continued to haunt me to this day...then, i saw a rheumatologist in 2011 with my painful fingers. With all megative results, she gave me Plaquenil. On to my 3rd week or month (forgot now), i just woke up with extreme itchiness in both legs with no visual symptoms (no hives, nothing in my skin just itchiness). I took different anti allergy....but the itchiness became pain. That was the start of my nerve pain saga in Oct 2011. The years to follow were diagnosis after diagnosis...right now, mmy major problem is my lungs are infected with a Non-Tuberculous Mycobacterium (NTM). I also have Bronchiectasis and Restrictive Lung Disease. On top of all these, i also have abdominal problems...
Thank you for your response to my post. I really appreciate it.
Regards.