Sjogren's - anyone have it?

[Piaffe11]

So I’m in the process of being diagnosed with Sjogren’s disease/syndrome. My rheumatologist has been slow to diagnose me, which seemed surprising to me with my symptoms. So far my symptoms seem to be the following:

• dry mouth
• damage to my parotic glands on both sides
• dry eyes
• dry skin
• dry hair (officially not a symptom, but I have read of others also suffer from this)
• chronic acid reflux
• fatigue
• inflammation more specifically located in my back, hips, knees
• some burning/tingling in my fingers, but I always assumed my arms fell asleep
• potentially brain fog, but hard to say

My blood work seems to back up this diagnosis, which my rheumatologist admitted in my last appointment, but he will not yet diagnose me or start me on any meds until I get another ultrasound (4th one in the past year). He did tell my GP I have Sjogren’s, so there’s that. I am not sure why he is so hesitant. It seems like Sjogren’s is pretty common. Every appointment I have with him, I wouldn’t say he’s outright dismissive but it’s almost like he comes across like I am making up symptoms to fit the diagnosis. Unfortunately, I am stuck with him - but my GP is amazing and will champion anything I need.

I have underlying ITP so I am not new to autoimmune issues, but this is my first one that is more of a blanket attacker. The symptoms seem to be so vast, it’s hard to get a sense of what the impact will be on my life/lifestyle.

Is everyone on some form of plaquenil? The rheumatologist said if he diagnoses me, I would be put on hydroxychloroquine. Then are each remaining symptom dealt with by a separate specialist/doc? He hasn’t exactly be forthcoming.

My hair breakage is probably my main concern right now. I am throwing as many moisturizers at it as I can, but it’s not helping. I have had chronic back issues for the past 8 years and chronic pain probably the last 3. Unsure if it’s connected or not. I am walking almost 8km every morning and riding my horse 4-6x a week whether I am in pain or not, so it’s not that I am sitting around. Thankfully my ability to sweat does not seem to be impacted.

Maybe this is just a bit of a vent, but it’s super frustrating and stressful. Pain is preventing sleep a lot of day (stress doesn’t help) and the fatigue makes getting moving difficult. It would be helpful to hear how others cope with Sjogren’s.

[RMJacobs]

I’ve had secondary Sjogren’s (defined as coming after a related autoimmune diagnosis, in my case rheumatoid arthritis) for over 25 years. When it’s secondary, it doesn’t seem to hit as hard, or maybe the symptoms it causes are attributed to RA. I use eye drops during the day and eye ointment during the night, which help my eyes a lot. My skin is very dry, my mouth drives me nuts (more on that in a minute), but my hair isn’t affected.

I had all my teeth pulled in 2009. Sjogren’s and RA put the nail in their coffin. I’m much happier with dentures (no implants; I didn’t feel I needed them, and I still don’t). I am constantly sipping water and keep a frozen water bottle on my nightstand at night.

My daughter, on the other hand, has primary Sjogren’s and she struggles with it. She has a high rheumatoid factor but has not been diagnosed with RA. She thinks it will be in her future (she’s 32). She has permanently enlarged lymph nodes in her jaw and her knees drive her nuts. She’s been doing bursts of prednisone, which I strongly discourage, and she finally listened and was prescribed plaquenil. I don’t know whether she has started it, and with what effect. We’ve been consumed with talking about her upcoming wedding (next week! holy crap, it’s here already!) and just haven’t had much time to devote to anything else. I figured we’d get back to talking about it after the wedding.

Sjogren’s should be a pretty easy diagnosis as I believe there is a definitive test these days. So I don’t understand why your rheumatologist would be hesitant to commit to the diagnosis.

I took plaquenil for RA way back in the dark ages before biologics were available (right after my RA diagnosis in January 1998). It didn’t do much for me, nor did other traditional DMARDs. I finally got RA relief in 2003 when I started Humira, and I’ve been on a couple of other biologics since then.

Hopefully your rheumatologist has stressed the need for a baseline eye exam and then continuing exams as long as you are on plaquenil (some doc say every six months, while mine wanted yearly). I never had eye problems from it, and the only side effect I ever had on it was due to my own stupidity. I took it on an empty stomach the first time and spent the morning throwing up in my trash can at work, which endeared me to my coworkers. Luckily, most of them understood that it hit so hard and so fast that I couldn’t get to the bathroom. The next morning, I ate something when I took it and was fine from then on.

Best of luck!