Lupus Guide for the Perplexed: Eye Problems

Symptom:  Dry Eyes
 
Associated Terms: 
keratoconjunctivitis sicca;
Sjögren’s Syndrome; 
blepharitis; xerostomia;
There's No Crying In Lupus; 
No Tears for You!


Just like other organs, SLE can involve the eyes and the organs associated with the eye as well; the symptoms usually consist of dry, red, and irritated eyes without the associated fun of pot-smoking; dry mouth, without the associated fun of pot-smoking; and conjunctivitis, without the associated fun of... oh, never mind.  You get the point.  Your eyes are baked but the rest of you is not. 

The associated dryness, irritation and lack of tear production can, naturally, cause problems with your eyes.  For one, you might be really, really prone to conjunctivitis, better known as pinkeye.  (Pinkeye-- seriously?  There's nothing quite like your eyes reminding you what it was like being in kindergarten again, right?)  For those who have underlying diseases causing the problems, it can lead to other nasty things.  Like blindness, or damaged eyes. 

Yeah, sometimes it feels like that. 

The underlying causes are different for each person, but trust me it's probably somehow related.  One common manifestation is keratoconjunctivitis sicca, which basically means a "dry inflammation of the surface of the eye." Your eyes feel like they have sand in them.  The surface gets red and dry, and sometimes it just hurts to blink. 

Another common problem is blepharitis, which may sound all naughty and whatnot, but it just means that you have a problem with your eyelids getting irritated and swollen.  You know, like that guy up above.  Not a problem at all. 

And a really, really common problem is xerostomia, which just means cotton-mouth.  If your immune system is bothering your tear glands, there's a good shot it's bothering your other lubricating glands, too.  

This can often times be caused by a various array of irritations, but a really common one is a lack of proper eye lube.  You see, in your face is a little version of the Soup Nazi keeping you from getting your fair share of tears to keep your eyes healthy.  He smacks your fingers with his itty-bitty ladle and screams, no tears for you!  NO!   Some of us also have a Spit Nazi, so we get dry mouth along with it. 

Another possible problem is Sjögren’s syndrome, which is its own little autoimmune hell in a Dixie Cup.  Sometimes it occurs with other autoimmune diseases like lupus or rheumatoid arthritis, but Sjögren’s syndrome can also wreak havoc all by its little lonesome.  5 to 10 percent of lupus sufferers will have this disease, and getting close to half of Sjorgren's sufferers will have something else, too.  Some of the major problems with this disease are white blood cells gunking up and attacking the glands in your face.  Since it overlaps so much with other diseases like SLE, it can be hard to diagnose. 

The upside is that Sjögren’s is uncommon, and the other problems can be treated fairly easily with a few hygiene changes, such as using atrificial, preservative-free tears, eye ointments, cleaning your eyelids, and watching depressing chick-flicks.  (Okay, I made that last one up.)  The Sjögren’s Syndrome website has some great tips on all that if your interested.  

Gray Matters

I hate doctors.  I especially hate specialists.
I hate examination rooms. 
I hate health insurance.  
But mostly, I hate this $*&@#  #&#^@^%  #*%%@ disease. 

Six years, who knows how much money and worry, and I still don't have a f------ diagnosis.  I just so want to hurt somebody.  Preferably my rheumatologist, which is funny, because he made the right call and is a reasonable fellow.  But I still want to punch him because he works in a field of medical study that really pisses me off right now. 

So, I went to see Dr. W yesterday, full of fear, and loathing, and really bad lunch because I had to grab something on the fly.  He listened to my medical history, poked my joints really carefully, and told me to get dressed.  Then he came back in the room, sat down, and said, "Well, I'm afraid you're in the middle of a medical gray area right now--" and I almost immediately burst into tears, not because I was disappointed that I didn't have a disease, but because it meant I couldn't get any kind of treatment.  I am so non-functional right now I can't do shit except sleep and cruise the Internet, and he wants me to keep waiting.  That reaction kind of startled him. 

In any case, here's what I learned:  first of all, my positive ANA ain't worth shit in terms of a diagnosis.  In fact, he said, people will pop positive for one test and then have a negative test later.  People pop positive on an ANA for no reason at all.  And, since my lupus antibody panel was clean, I have to keep getting my ANA run to see if it stays positive.

Second of all, my ANA result could be indicative of CREST syndrome just as much as lupus.  To be honest, CREST syndrome scares me more, maybe because the idea of my lungs and pulmonary arteries turning into concrete sounds, you know, dangerous.  

In the end, all I left with was a suggestion to try melatonin on top of my Elavil to help me get to sleep and DHEA to help with the fatigue.  

So, I went in to a specialist's office with a positive ANA and swollen joints, and I left with a diagnosis of:  dum-dum-dum...  positive ANA and swollen joints.  Welcome to the doldrums of autoimmune diagnosis, people. 

My final meal

 I have to admit-- this is my last night before my big rheumatology appointment, and I'm not exactly a picture of mental peace right now.  I couldn't get to sleep last night, had a couple of panic attacks, and I ended up sleeping on my futon downstairs with an old, beat-up stuffed Pound Puppy salvaged from my childhood for comfort.  (Oh-- and my husband is out of town.  His internship informed him that he had to spend a week in Baltimore about two weeks ago.  What sucktastic timing.)  So, whatever I find out tomorrow, I'm going to find out alone, and he gets to find out over the phone. 

So, what was my response tonight?  Sushi.  I went to my favorite faux Asian restaurant and got tempura salmon rolls, some soup, and some spring rolls.  And strangely, now full of salt, tempura, and MSG, I feel so much better. 

People are weird when they try to handle stress, and I guess I'm no different.  Here's for miso soup and maki! 

Insurance Sucks

The fabulous Dr. H. informed me a couple of days ago at my last appointment that the University has re-bid our student heath insurance and that we're going from UHC to Aetna.  I find this to be a prodigious waste of my time right at the moment I'm supposed to be finding out how bad the rest of my life is going to suck. 

Okay, so UHC wasn't exactly a walk in the park.  Every time I needed some kind of expensive test or imaging service, they required me to prove I was still a student.  Then they only gave me 30 days to do it, sent me the wrong forms (or lost them altogether) and the charges would be rejected in just a couple of weeks.  I have yet to get a single charge paid in a timely manner with them.  On the other hand, they've paid all my charges so far.  That's better than things could be-- I could have been stuck with the bill along the way.   

Even worse, I'm only going to get in one appointment with my rheumatologist (whom the fabulous Dr. H says is awesome) before the switchover to the new insurance at the end of the month.  That means new referrals, new paperwork, and worst of all, I don't know if my rheumatologist is going to even take the new insurance.  So I might have to go to someone else later-- and someone might not be a someone that Dr. H knows.)  

And, I'll have to find out all the new information on co-pays, specialist visits and whatnot, and if UHC is any indication, it's going to be the end of August before I get my insurance cards.  All while I'm zeroing in on an autoimmune diagnosis.  Not fun at all. 

Fessing up

It's such a hard decision, isn't it?  What do I tell my family?  When do I tell my family?  And whom?  

Well, as it turns out, I spent some time with my family a few weeks ago, and I had decided I was not going to tell them a damn thing until I had something concrete to tell them.  The way I figured it, there was no reason to tell them about the positive ANA until there was something more to go with it.

A lot of that decision has to do with family history.  My great uncle, my maternal grandfather's little brother, died of lupus about three or for years before I was born.  Great-Uncle "Lewis," as I'll call him, was always sort of the family dark secret because nobody wanted to talk about him.  I guess it was a sore subject, but I just remember snippets of conversation as I was a child about, "Well, then there was what happened to Uncle Lou.  But we don't talk about that."

Well, I decided a long, long time ago that my grandfather (who is now 87 and still a mean old bastard) wasn't going to know a damn thing about whether or not I had lupus-- not because I don't want him to feel bad (after all, if it's genetic, he's the carrier) but because the last thing I want is for that nasty, manipulative old jerk to have a reason to feel  sorry for himself and try to milk some sympathy.  He's a pro at it.  (And if it seems like I'm being hard on him...  don't  give him any sympathy.  He's one of the most violent, abusive people I've ever met.  Just 'cause he's old doesn't mean he got any sweeter.)

Okay, so my Grandpa "Prue" was sitting at his kitchen table while my mother, aunt and I helped pack him up to move him into a seniors apartment complex while my mother and aunt start gossiping.  Eventually the conversation turns to me, and I cringe.

"So, how's your health lately, honey?"  My mom asks innocently as she tapes up a box. "Still having sinus problems?"  I just grunt non-committally.  I don't want to have this discussion.  My aunt, who is a surgical nurse, picks up the conversation.
"Yeah, Ann-Marie.  Have they run any more blood tests on you?  You know, to check for immune stuff."  I just grunt again.  I look over at my grandfather, who perked up on the word "immune,"  and I cringe. 
"You know, have that run that blood test again, that ANA?"  She asks.  "Or, what about checking your complement levels?  I saw something on that when I was watching the TV a few weeks ago..."
"I was wondering if your swollen ankles was related," my mother pitches in.  "You know, to all the other stuff that's going on."   
"Oh, you mean like that heart condition?  Sure sounds like auto-immune stuff, doesn't it, Kay?" 

 My mother and aunt mosey down to the basement as they keep talking, and I look at my grandfather, who looks absolutely stricken.  Did he make the connection between me and Lou?  I wonder. He sighs deeply with watery eyes and says, "Oh, hell."  Enough was enough. 

What could I do?  I tramped after them down the stairs, locked them in a bedroom, and said, "Look, if I tell you what's going on will you both just shut the hell up about my health around Grandpa?"  and I came clean.  I told them about the positive ANA and the weird lupus antibody test, and that it's pretty obvious that I have lupus and can't get a positive diagnosis, and that was that. 

It was strangely easier than I thought-- I just needed clear, immediate motivation.   And a dysfunctional family.

Diagnosis Jitters

Now that the clock is ticking down on my appointment with the rheumatologist now that the fabulous Dr. H has sent my referral, I've been trying to think through what's going to happen next week when I meet with this new guy, whom the fabulous Dr. H says is really damn good.  He's obviously going to want to run more tests, as I have not had my complement levels or anything like that done.  But will he go ahead and tell me that I have SLE?  That's the question.  I've spent a lot of time over the last few days trying to figure that out.  

Okay, so the American College of Rheumatology set up eleven criteria for diagnosing someone with SLE.  Usually, depending on which ones you have, you only need four for your doctor to make the diagnosis: 

1. Malar rash: butterfly-shaped rash across cheeks and nose
2. Discoid (skin) rash: raised red patches
3. Photosensitivity: skin rash as result of unusual reaction to sunlight
4. Mouth or nose ulcers: usually painless
5. Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion. With nonerosive arthritis, the bones around joints don’t get destroyed.
6. Cardio-pulmonary involvement: inflammation of the lining around the heart (pericarditis) and/or lungs (pleuritis)
7. Neurologic disorder: seizures and/or psychosis
8. Renal (kidney) disorder: excessive protein in the urine, or cellular casts in the urine
9. Hematologic (blood) disorder: hemolytic anemia, low white blood cell count, or low platelet count
10. Immunologic disorder: antibodies to double stranded DNA, antibodies to Sm, or antibodies to cardiolipin
11. Antinuclear antibodies (ANA): a positive test in the absence of drugs known to induce it. 

So, in general, you only need four, and you should have more than one symptom at a time, if I understand things correctly, and some symptoms are more symptomatic than others.  Which ones have I had?

4.  Mouth or nose ulcers: usually painless
5.  Arthritis (nonerosive) in two or more joints, along with tenderness, swelling, or effusion.
6.  Cardio-pulmonary involvement
11.  Antinuclear antibodies (ANA)

 But those are the only ones I know I've had without any other explanation.  To be honest, I've had #9,  a funny liver enzyme test (while I was having gall bladder attacks) and I had #8,  protein in my urine (when I had the worst bladder infection in the world.)  Both of those, however, might have a perfectly logical explanation, as listed before.    

In addition, I have been treated 2-3 times for what everyone has assumed were patches of ringworm on my forearms.  As it turns out, those patches look a LOT like discoid lesions, and we treated them with steroid cream and they went away.  So, have I had symptom #2?  Maybe. 

So, it really is a judgment call.  I can't tell what my rheumatologist is going to decide based on my chart and if he thinks my canker sores are enough to count as a symptom.  It's going to come down to the bloodwork, I think, and what he makes of that weird lupus antibody test I had.  It didn't come back positive for any of the hallmark antibodies mentioned in #10.  But I did have anti-centromere antibodies. 

So much for trying to out-diagnose the rheumatologist.  I'm just going to have to sit tight and hear what he says. 

Getting Closer...

Well, it's about time.  I officially have my appointment with a rheumatologist for the fifteenth of this month, and I'm getting nervous.  This will probably be my first real step down the road of getting diagnosed for sure.  My doctor sent my chart via fax machine last week.  If you've seen my medical chart, that's a frickin' feat.  It's so thick now after four years that it won't even fit in the little chart holder next to the waiting room door anymore, and it's heavy enough you can use it as a door stop.  

The last time I saw my doctor, she used the term "pre-lupus symptomatic" to describe what's going on with me.  Ick.  I meet with her tomorrow to see if there are any other tests she wants to run before the big day, and to check on how well the Mobic is handling my swelling.  Honestly?  That's doing okay.  Now that I've been on it for 3 weeks, it takes care of most, but not all, of the swelling.  It's keeping me functional, at least.  So hooray for Mobic. 

So, the proverbial diagnosis clock is finally ticking.  And what's this dubious honor going to run?  Their standard office visit is $375.  Yeowch!  With my copay, I'll only be forking over $150.  That sill represents a little over 10% of my take-home pay as a grad student, but hey-- at least I'm not footing the whole bill.  Wish me luck!

Lupus Guide for the Perplexed: Malar Rash

Malar Rash
Other names:  butterfly rash; lupus war paint

Like that proverbial squeaky wheel, it's always the visible symptoms that get the most attention.  Most symptoms of lupus, and the ones that really scare the hell out of us, are the ones that run silent and can't be diagnosed easily.  These symptoms-- numbness, depression, inflammation, pericarditis-- are the ninjas of lupus symptoms.

But then there are the attention whores of the autoimmune world.  The butterfly rash is the most obvious, because, just like Paris Hilton or Amy Winehouse, they're bitchy, flashy, and they request, nay, demand that they be in your face all the time. The rash can range from the "blushing"  look to bearing a familial resemblance to Seal (whose scarred cheeks are, in fact, a malar rash).  Sometimes your cheekbones and the bridge of your nose are just a little flushed, like your lupus slapped you across the face, and for other people it's a scarifying, face-munching wreck.  

 Yes, your disease really is this annoying. 

When somebody sees the malar rash, they automatically assume that lupus is involved, kind of like assuming Don King is around whenever there's a boxing scandal.  You know, like those commercials they've been running on TV recently: a woman looks in the mirror at her oh-so-obvious blush over the bridge of her nose and down her cheekbones, and the television asks in a hushed, pensive voice-over, "could I have lupus?"

Well, it's not so simple because, as it turns out, not everybody's autoimmune disease is an attention slut.  Only 45-65% of people ever develop the facial rash as an indication of SLE.  That leaves up to half of us without a blush on our cheeks and a visual cue for our distress.  On the other hand, just because you look like you've been stung in the face by a swarm of paper wasps doesn't mean you have lupus, either.  There are a whole host of inflammation disorders, infections and whatnot that can also give you a red nose and shiny cheeks-- dermatomyositis, a tinea or streptococcal infection of the skin, cellulitis, or plain old acne.  So, don't take out that life insurance policy just because you've gone patchy in all the right spots.  Nothing with SLE is ever that simple. 

Unless you have skin involvement with your lupus, you may or may not ever find yourself daubed in lupus war paint.  I'm still rash-free on my face; I have problems with bruising instead.  That's my autoimmune disorder's plaintive, whiny, attention-whore cry for attention.  That malar rash may be the one sure-fire sign your doctor is looking for, so don't be fooled that you don't have lupus if you've never had a rash.  Instead, it could be that your SLE is much more sedate, and discreet, than having Paris Hilton splashed over your face like a magazine centerfold.

Lady Gaga: Lupus diagnosis spokesperson?

Well, I'll be damned.  It seems that Lady Gaga and I have something in common after all.

In case you haven't heard, Lady Gaga has been tested for lupus and has had a positive ANA; she's not symptomatic, however.  She had a relative with the disease, so she's being watched carefully for it. 

I can't think of a better spokeswoman for SLE: she's surreal, completely unbelievable, and you never know what the hell she's going to do next.  Hooray for Lady Gaga and the fight against lupus!