Category Archives: epithelial basement membrane dystrophy

My RA eyes are getting really dry

Well, while this isn’t new… it is definitely very irritating (in a lot of ways).

For the last several years it has been a given that I have dry eyes and dry mouth  (sjogrens).  It’s kind of getting old fast.  But the newest development has really started to get to me.

I have started to have dry crusty discharge at the corners of my eyes.  Yeah, I know everyone does now and then, especially when you wake up in the morning.  Mine has gotten to be like that only fifty times worse.  My eyes are like that almost all the time and a few times it has gotten bad enough that when I tried to clean my eyes it has scratched my lower eye lid.

I use Refresh lubricating eye drops several times a day but the relief is only temporary and then it keeps coming back.

I’m going to have to break down and 1. rat myself out to my rheumy on Monday when I go in for my infusion and 2. go see my eye doctor to see what she has to say about the new development.  So far, I think that the epithelial basement membrane distrophy hasn’t gotten any worse but only the eye doctor can verify that.

When my hands/feet/hips/shoulders/knees hurt it’s annoying and they hurt but when it comes to my eyes I really start to worry.  The fear, I know, is needless… but… it’s real and it’s there none the less.

Anyone else have this interesting development?  I have been doing considerable reading but it is still kind of new and concerning.

 

April
11/26/16

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EBMD One of RA’s extra special gifts

SO…. I’ve got RA and Sjogrens and Raynauds.  They kind of all play off on each other.  RA is primary, the other two kind of are just co-existing conditions.  These kind of affect me to one degree or another pretty much every day.

My RA is pretty much currently controlled.  Yeah,I’m on an obscenely expensive cocktail of meds, and I get tummy shots every week but it is a pretty decent trade off at the moment.  It means I’m in reasonably good shape for the most part and I can hide my rather thin hair with my rockin cool Buffs.  Can’t hide the chemo brain so much, but I’m trying to determine the best way to get around that.

OH… and something weirdly new… since my hysterectomy… I’m having hot flashes… which is wicked cool because my feet are freezing (Raynaud’s) and I’m trying to figure out to keep my tootsies warm while mitigating the hot flashes.  In the next couple months that should start to take care of itself.  I’m not supposed to take hormone replacement because it can lead to an increased chance of cancer in a body that is already having an increased chance of cancer (thank you RA) so I think I will keep on taking methotrexate to keep that at bay too… I look like a real goofball walking around in shorts and a tank top and fuzzy warm socks.  I’m SO glad I’ve never cared a whole lot about fashion… I’m a honey badger!

This week I had my annual eye exam with my Ophthalmologist.  I always kind of view this with mixed feelings.  He’s… eccentric.  It’s late summer and he always whistles Christmas songs.  He has an incredibly interesting sense of humor.  He also tells me the ongoing saga of my EBMD.  Epithelial basement membrane dystrophy (EBMD) is this weird ass condition where the cells of your eye get all loose and weird and can stick to your eyelids in the morning when you wake up, your eyes can hurt a lot, you can get way blurry vision…. blah blah blah.

This medical explanation is pretty good if a little… medical…

The corneal epithelium produces and adheres to its underlying basement membrane. Corneal abnormalities associated with map-dot-fingerprint dystrophy are the result of a faulty basement membrane, which is thickened, multilaminar, and misdirected into the epithelium. Deeper epithelial cells that normally migrate to the surface can become trapped. Epithelial cells anterior to aberrant basement membrane may have difficulty forming viable hemidesmosomes and basement membrane complexes, which attach to the underlying stroma, resulting in recurrent erosions. Irregular epithelium centrally can cause decreased vision.

It is exacerbated by dry eyes… so, while it may have existed independent of my RA… it never showed up until… oh… about 3 months before my advanced case of RA was diagnosed.  Coincidence?  Yeah, probably not.

I’ve been kind of trying to dig, but I can’t seem to find anywhere that links or discounts the link between the two even as kind of… well maybe that would make it worse… kind of thing.  One website shows that EBMD might help to diagnose Sjogren’s … so maybe…

So… I’ve been on Restasis for a couple years.  Apparently it isn’t helping a whole lot.  I’m not getting another prescription for that… now… it is a matter of just keeping my eyes as wet as I can.  Tear replacement drops (over the counter) and something that isn’t quite over the counter but what they are telling me is BEHIND the counter (kind of like cold medicine and cigarettes… hmmm) called FreshKote… Three times a day to try to rebuild my tears.  They kind of burn a little, I hope that means they are working… I’m glad that the pharmacy put the prescription through as a real prescription, because it looks like my insurance is going to cover it… which is good because $40 a pop for eye drops makes my brain hurt… but… whatever it takes to keep on keeping on, I guess.

Oh… and in about 2 weeks, I can pick up my shiny new glasses… Squirrel Girl has given them her stamp of approval… so… 😉 maybe they will be an improvement.

Gallery

The Invisibilty Factor

Happy (I guess happy…) National Invisible Chronic Illness Week. Realizing that this is the week to make invisibility visible… I’ve been thinking about just how many people I know (or how many people I might know) who have invisible conditions. … Continue reading

Sunday Morning Thinking

I’ve been digging this morning.  It is pager week, so we aren’t walking… it is going to get too hot too soon and I have to carry a heavy laptop and its power cord along with the pager and cell phone.  So I’m taking the opportunity to dig into what Dr Stephanie and Dr B (the optometrist) have been talking to me about this week.

The MTX needles aren’t as big as the flu shot needles (got mine yesterday) and even with the cost of the MTX meds, it is cheaper than paying to park at the dr office along with the gas and wear and tear… so… I’m going to suck it up and do it for myself.

The eye doctor said that the Epithelial Basement Membrane Dystrophy (EBMD) is actually getting a little worse.  The erosion on my left eye is about twice as big but not yet interfering with anything, so that is good.  He is all for the Restasis drops… twice a day.  He asked me what the chances are of my changing careers.  Really?  I enjoy what I do and I don’t know what else to do other than be me.  I don’t know if I could change careers.   Add in that I have reasonably decent insurance (if they do make some silly rules on some thing) and we are more and more relying on that insurance.  Pretty sure I won’t be changing any time soon…

So what have I learned this morning…

What is Epithelial Basement Membrane Dystrophy (EBMD)?

Epithelial Basement Membrane Dystrophy (EBMD) is a genetically influenced abnormality, which causes small islands of the corneas surface (epithelium) to improperly bond to the underlying tissue. Similar to newly laid sod, these islands of unstable tissue are susceptible to frequent erosions. Although not typically sight threatening, corneal erosions can be a chronic problem. They may alter the cornea’s normal curvature, causing periodic blurred vision. They may also expose the nerve endings that line the tissue, resulting in moderate to severe pain lasting as long as several days. Generally, the pain will be worse on awakening in the morning, or during the night. Other symptoms include sensitivity to light, excessive tearing, and foreign body sensation in the eye.

Between this and my Sjögren’s Syndrome… what am I supposed to do other than the Restatis?  I have this cool Dry Eye Treatment paper…

Stop using Visine or other get the red out kind of drops
Drink enough water (he freaked when I told him I was drinking about 3 quarts of water a day… he told me to divide my weight by 2 and that is how many oz to drink, I shouldn’t be drinking so much!!!… hm… that is about 2.9 quarts a day… damn… I have to measure like 2 oz less a day… really?   dork… )
Take regular computer breaks (LOL LOL LOL LOL LOL… okay)
avoid air blowing into your face
avoid ceiling fans even when sleeping
consider a room humidifier
evaluate your meds for dry eye side effects
use artificial tears 2 – 6 times a day
take oral supplements (omega 3 fatty acids, fish oil, 1000 mg 3 times a day)
use artificial tears oinrment at bedtime (gues he was never on pager patrol!)
start lid hygiene (LID hygiene?  huh?)
use restatis
be fit with punctal plugs (yeah… not so much)

So… the next chapter of the adventure commences…