What's a flare like? What can cause a bad one?

[Pbrain]

I was positive for Sjogren's a long time ago but, for the most part ignored sporadic dry eyes and mouth (most noticeable at night). In 2002, I'd had a serious episode of MS-like symptoms that I found out a few ys ago could've been caused by Sjogren's. You guys were helpful as I learned about that. A switch to prednisone from cortef last year, and I was doing well.

Ff to last Friday-woke up and walked into a wall (just like 2002). Difficulty with balance, dizzy, headaches, etc.STILL experiencing problems today. Can't drive even. So I've been trying to figure out what triggered this serious (but not as severe as 2002 tg) flare. A few possibilities:
1) adrenal insufficiency worsening or mini crisis. Can cause some symptoms, and does seem to be involved this time, but I've had full blown crises ending up in the ER and they didn't involve loss of balance.
2) Onset of cold sore a week before. I've had them three times since starting prednisone (seriously, ENOUGH!), but never with balance problems.
3) Sjogren's-late lightbulb. Several nights in a row before onset of dizziness, I experienced RHE WORST cotton mouth I've ever experienced in my life. X1000. I could barely move my tongue as it felt glued and stiff. So I'm wondering if I had a flare of autoantibodies/attack, and then....what...symptoms? I don't quite understand how it works. What have others' flares been like?

As an aside, I have neutropenia (unknown cause) and I also ate several helpings (in fact, the days may even line up with the dry nights) of live culture yogurt, which I've never eaten before. By accident, I came across a transplant site that said people with neutropenia should NOT eat that kind of yogurt. Soooo, maybe I instigated an immune reaction (to an "infection") that set off Sjogren's that set off thus flare?

Any thoughts? I can't get into a rheum for a month. Looonnnnggg month if this doesn't get better!

[cccourt1942]

First: call the rheumatologist back and say it is an emergency.  (specify NOT a hospital emergency)  Walking into walls pretty much constitutes an emergency.

And the dry mouth:  Your description describes my LAST flare before my diagnosis.  I always said sandpaper mouth.  You nailed it!

Can't really speculate as to other symptoms and possible relationship to other conditions you state.  What is your age?  I mean ..20 to 40, 40 to 60, or above?  That dizziness  and loss of balance really should be addressed...I think....immediately.  Since you are already dxed with sjs, it's strange your dryness is so bad suddenly...unless you never had this symptom and are not on a med for the eye/mouth dryness.  I am not a doctor.  I am qualified for nothing except to say GO TO THE DOCTOR!! 

Keep us updated.  Good luck.
c3

[Kathy57]

I agree wholeheartedly with everything that C3 has said.  You need good treatment and ASAP.  I would try to get in on an emergency basis or at very least - take the first cancellation.

I would keep calling them until I was seen!  "Gentle harassment." 

Let us know how this works out.  We are "on your side!"

Kathy

[Pbrain]

Cccourt, what was your flare like after the sandpaper mouth? This is the first time that I've noticed a possible relationship so I'm curious what it's like for others.

I'm 48. I'm not on medication for Sjogrens because the dry eyes/mouth do not affect my Quality of Life.  I haven't found a Rhem (I've moved around and had many over the years, starting in my teens with Hashimoto's and then 20's with phospholipid syndrome) who understood the relationship between Sjogrens and neurological symptoms (thank you to this group for having explained that, a few ys ago). My new neuro (an autoimmune/neuro specialist) recommended a Rhem who does (!) but I'd put off seeing him since the last rheum had done thousands of dollars in blood work (cost me ~$1000out of pocket) for nothing. I basically gave up hoping for help. Until I was walking into walls again, for the first time since 2002, and desperate. But now to get in to see him? Oh the red tape! I walked to the office and begged for an appt. Taking pity on me, they squeezed me in for mid-April (better than May!). But since the specialist wasn't near me and I can't drive right now, I accepted the appt with the earliest opening. Re-thinking that I needed a specialist, I followed the receptionist's instructions (who told me to do this if I changed my mind) and tried calling the general line to schedule with the specialist.... First they said "but you have a rheum on record" (we have a giant medical system in our city-all doctors citywide are basically "in the same practice"). Noo, I saw a fellow (who'd consulted a doctor, whom I'd seen with her for a 3-min wrap up) and she'd moved on. Then they noticed that I already had an appt scheduled (ARGH I'm thinking!). Explained that, too. Although she was sympathetic, she's said she wasn't allowed to over-ride anything and the office would need to get permission to schedule me with another doc, a wait of 24-48hrs again. <fingers tapping>

Anyway, I increased my steroids a little bit, as I could tolerate, and am doing better. A little over a week after onset, and only a little stumbling when a swivel my head too quickly. Dry mouth at night is mild. I do have a special mouthwash that I will try using more consistently for dry mouth, as I think it helps.   

As to why the sudden onset-I wish I knew! It was more than stress (because I have that all the time!)

Thank you!

[cccourt1942]

PB:  I hesitate to answer your question due to many variables.  The first, and foremost, is your neurological symptoms.  These trump the SjS many times over.  Second is our age difference.  I say that because my "last" HUGE, LONG flare I was working  4 to 5 days (AT 71) and that is ALL I could do.  Some days I would look around and wonder where I was while driving to the school.  btw: The school was located next door to the high school I went to + being  on the street where I grew up.  This didn't happen each day, but over a four month period, it happened 3 or 4 times. 
     What I can tell you about my advancing symptomatologies is this:  a doctor noted my dry eyes 30 years before my dx.  The practice of my profession required drinking water.  Plus...I had always been a copious water drinker.  The last 10 years I had told people (who would say if I was getting up all night to pee...don't drink so much water at night) my body craved water by 4:00pm every afternoon..and I drank at least 2 liters of water in the afternoon / evening...maybe more.  I would still awaken with such a dry mouth I had to drink water to have a "dry" swallow!  It was during those years my lacrimals and salivaries were dying (well....hardening) or being possessed by those pesky white cells.  By the last semester I worked, ( I am a speech therapist--I was retired but still doing contract work) I couldn't work five minutes without drinking water.  What it was amounted to:  I couldn't TALK five minutes without having such a dry mouth that I couldn't talk. 
      I am new to this disease (and its treatment) but I believe  a GOOD rheumatologist might do blood tests if you have other symptoms, but really they should be checking the back of your bottom lip (for salivation signs..dryness specifically) , checking around your parotids, and telling you to check with an otolaryngologist and an ophthalmologist for "hard" signs of eye and mouth dryness.  I say this as I suffered the last 4 1/2 years with sialadenitis...and my ENT never jumped to SjS.  In his defense I never gave him any other symptom.  Until I got my SjS dx I had no idea my lacrimals were hardened and my salivary glands had been damaged by the disease.  (even though I had not produced a tear for over 10 years)  Heart disease is not the only "silent" killer!!
       SjS may be doing its damage without your realizing.  AND one more reason I hesitate to say too much is: you are knocking on the door to perimenopause and menopause.  Hold on.   

[Jasper]

Since these symptoms (walking into walls, difficulty with balance, dizzy, headaches) are new, perhaps you can get in to see your Neurologist on an emergent basis. Maybe the Sjogren's is attacking your neurological system. It sounds like you need a neurological assessment for them anyway.

Then, maybe he could get you in to see your Rheumatologist at an earlier date.

PS: To respond to your question about what a flare is like (for me), my symptoms, when I go into a flare, are as follows:
Edema lower legs, ankles, feet
Increased joint, tendon, and muscle aches, pains
Fatigue
No energy
Poor concentration
Feeling of increased inflammation and fluid retention in body and joints
Problems with driving in traffic, decision making, easily overwhelmed
Urinary dribbling (with no urge to void and even on empty bladder)

This latest flare I am also having swaying problems, backwards and forwards, even with my eyes open. However, this may be due to progressing peripheral neuropathy (not just the flare by itself, although the flare is probably increasing the damage)

[grammad97]

A flare for me is what I call "life sucking" fatigue, chills( I can layer up with 3 pairs of socks on my feet alone) , awful joint pain which breaks through my daily pain, and extreme nausea. I usually get the chills first so it's my early warning system a flare is coming.
Sometimes I will have neuropathy with it but not always.
Hope you spoke with doctor about walking into wall. It sounds worrisome to me and I wouldn't hesitate calling my doctor.

[Pbrain]

Thank you for the feedback. I did get in quickly to see my neuro, who did a thorough neuro exam. My problems this time appear to limited to balance (well, he couldn't check my bladder sensation. In hindsite, not sure why I didn't emphasize that the two problems were correlated). This is good news because the first time, the 2002 episode, involved numerous cranial nerves, as well. The Neuro is the one who'd recommended the rheum specialist. I still haven't heard back about scheduling an appt w him EVEN THOUGH I'd emphasized I had a referral and that it was a crisis. By the time I get in, my symptoms will probably be resolved-a good thing!- but I wish I could get the special blood work (like C-reactive protein and Sjogren's Ab tests) while I'm symptomatic!!!

Because my dry mouth was so bad before this flare, it's my best guess as to what happened. I just wish I knew why. I've lived with a low level subconscious fear ever since 2002 (which made me seem intense when I saw doctors, asking questions and wanting answers about what caused something in the past) because I didn't want to ever have to live through that again! The dry eyes (yes, tested and diagnosed using paper by my eye doctor many ys ago) and dry mouth (effects noticed by my dentist) don't usually bother me, although I've used eye drops at times.