penn,
pSS is so much much more than just dryness (SICCA) issues, as you are proof of this. It would be nice to be told the whole truth about pSS, when diagnosed. After my positive lip biopsy and seronegative testing, I happened to be seeing a doctor for sleep apnea ...he referred me to a Pulmonologist, it was very confusing for me, no one was keeping me in the loop about why I was seeing a Pulmonologist. Even the dr. thought he was seeing me because I had asthma, except I have never had asthma and don't have it now. Fortunately, he was 1 of 3 drs over the years that was thorough and listened to me.
I had the small ground glass infiltration with atelectasis and scarring and low levels of fluid in my lungs. He really stuck with me when he realized I was not there for asthma, but for pSS. He even did the whole slew of blood tests for LSE, he thinks I may have the early stages or I could have LSE and stay seronegative for years. He had me take Doxycycline for a month +-, wanted me to take it daily going forward, I told him no. I have resistance to many antibiotics, I have bad side effects when I take them longer than just a week +-.
He wanted to put me on Prednisone pills and a steroidal inhaler..again I said no way. I had Prednisone years ago, for only 7 days, titration up, then down...it was more like entering hell on caffeine. I gained 10 lbs in 7 days (took over 9 months to lose the weight). I shook constantly, I was taking Benadryl to help hide the shaking, since I had to attend a business conference during this time. Tired and wired, it the perfect description. We finally agreed on Alvesco inhaler, started low dose, but it was working and no bad effects, so the dose was increased a bit. It also really helps with the chronic painful cough, from the pSS. Over about 2 years of being in close contact with the Pulmonologist, my CT showed improvement of the atelectasis, small scarring and limited trace fluid. I had significant issues with phlegm during the 5 years that my PCP was being lazy on treating my cough. This is also part of my pSS.
When I have bad attacks, I gargle with room temp. carbonated water. Best weird treatment I've ever found. Beware, if you try it, I suggest doing it over the sink first...until you find out how your throat will react. The first time I did it, I put too much water in my mouth and as I started to gargle, I choked on it and spit it out all over the floor 🤪.
I have small fiber neuropathy also.
The RH I had, I was with Kaiser Permanente HMO then, but I had to leave it because I turned 65., the RH, I never met. Because I was seronegative, she just brushed me aside. When the joint pains really picked up the pace, her answer was " unless your joint is red, hot and very swollen, I am too busy and underpaid to deal with you. Call your PCP". What a wonderfully narcissistic dr.
I would be interested in your path to diagnosis(s), treatments, testing you did. Do you have multiple autoimmune diseases? Do you have other diseases? Did you get small fiber nerve testing? I have not, it's much different than just fiber nerve testing, which is for large nerves only. What did your RH know that made her say your case was severe?
What I know about pSS is from my own research. I love Sjögren's Advocate site. She is a patient with SS, but she is also a doctor. She gives great insight into the multitudes of symptoms and manifestations. She does not provide medical treatment as a doctor. She explains that huge complexities and that truly most doctors, even RH, do not have a clue about how widespread SS is.
It is medically negligent the way most everyone views SS. ShelleyW