one of the more annoying aspects of Sjogren's is that the disease itself isn't treatable. The best I get is the treatment of symptoms. Don't get me wrong - i'm thrilled that modern medicine allows me to take anti-inflammatories and saliva-stimulating drugs and eyedrops to east the swelling and irritation in my eyes. I just get tired of not being able to make it go away.
Today is a very good example. This morning I had my occasional checkup with my Rheumatologist, Dr R, and this afternoon, i had my semi-annual checkup with the eye doc, Dr M.
I've been with Dr R for probably 5 years now; he's my 4th Rheumatologist in 8 years (more on that another time). The appointments are always pretty quick with him. We review my list of medications, he asks if anything new is happening in my body, he does bloodwork and I'm on my merry way. He's not a total slacker - he's the one who pushed me to see the sleep specialist, who diagnosed both sleep apnea AND asthma. He's also the one who encouraged me to check out the weird swallowing thing as well, before it got worse. But on the whole, he doesn't DO a whole lot.
Now, however, things have changed just a bit. Bloodwork done by my family doctor a couple weeks ago came back with some wonky results: elevated liver enzymes and decreased neutrophils. Neither is good. My first thought was "crap, this is NOT good! What's wrong with me now?!" and later, it occurred to me this could mean I've moved to the "organ involvement" part of the autoimmune circus. But before I go freaking out about that, I'll relay what Dr R had to say:
first, the low neutrophils, when combined with some other wonky stuff he saw, is probably lab error. Easiest way to determine that is to re-run the test.
Second, the elevated liver function could be many things -- many of the drugs I'm on are metabolized in the liver, and I've been on most of them for several years now. Or it could be a sign of fatty liver disease. Again, the best way to make sure it wasn't a fluke is to repeat the test.
For now, I wait. I will call them in the morning for the results, and if the liver function comes back elevated, we start eliminating medications one by one to rule those out. I have a follow-up in five weeks either way.
~*~*~*~*
The eye doc this afternoon was also more of the same. This appointment is the one where they dilate my pupils and check for retina damage. Plaquenil, the drug i take for Sjogren's, has been known to cause retina damage. my eye doc is very quick to clarify that said damage occurred with MUCH higher doses over a much longer period of time, and he has yet to run into a case of plaquenil-induced eye damage. But as long as i'm on the drug, it's a risk, so i get to see him twice a year. In six months, they do all of the vision-related exams.
As with Dr R, Dr M checks for signs of disease progression, and encourages the self-care stuff that will keep life tolerable: prescription steroid eyedrops twice a day, artificial tears as often as I need them, humidifying my home during the dry winter months, and protecting my eyes from wind and sun while outdoors. They also sent me home with a handout on "eye hygiene." Apparently it IS ok to scrub your eyes, and is encouraged! I'm to use my face wash or other gentle cleanser to gently clean and scrub along the lash line of both the upper and lower lids once a day. That should help clear up the gunk in the corners, and free up any loose lashes that are waiting to torment me. Who knew??
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