Rheumatoid arthritis and glaucoma, cataracts and sjogren’s syndrome – update

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My nine monthly eye check came around this morning.  Only its been nearly 12 months, because I’ve already postponed it twice.  Flares and stuff. You know how it is.

Today I didn’t feel great. I had to get my mother to drive me.  Because every 44 year old loves to call Mummy to be driven to their doctor’s appointment.  It’s just one of the many joys of being chronically ill.

Still, I’m lucky I have a mother and that she cares enough to drive me.  Without her I would have had to cancel again.  So, stupid pride aside,  I’m all good.

The reason I need eye checks is because I have Sjorgen’s Syndrome.  It manifests as dry eyes.  Sjogren’s is about much more than dry eyes, but today was about eyes.  And mine are dry. Very dry.

I use eye drops with vitamin A several times a day. I also use a thick gel every night. Well…every night that I remember. Sometimes I forget for a while, and then my eyes remind me that I need to NOT forget.

When my eyes get dry, my eyelids get inflamed.  It’s called blepharitis, and though it’s not at all serious, it is uncomfortable.

More serious is glaucoma.  Long term use of prednisone increases your risk of glaucoma significantly. Elevated eye pressure, or intraocular pressure (IOP), is a risk factor for glaucoma.  My eye pressures have been high, but there is no damage to my optic nerve.  Originally my eye pressures were 10 in each eye.  Which is the low end of normal.  Its fabulous.  Then I started taking prednisone.  At my last test, my right eye was at 20 and my left was at 16.  That was a concern.  Today both eyes were 15, so the pressures have levelled off, and are smack in the middle of the normal range.

Most importantly, my optic nerve is ‘pristine’ to quote my ophthalmologist. She is very happy that I have tapered down to 10mg.  She agrees that 7.5mg would be even better.  And 5mg would be break out the French champagne kinda stuff.  But she understands what a big deal me getting down to 10mg of prednisolone is.

The other thing that prednisone causes is cataracts.  I have slow growing cataracts.  Again, they have grown some.  However I passed all my eye tests brilliantly.  My right eye is not as good as my left.  I still have trouble keeping it in focus sometimes.  It could be the inflammation. It could be the Sjogren’s (most likely).  It could be the cataracts.  And it still could be neurological.  But with the way my optic nerve looks, that’s less likely, which pleases me no end.

So my vision is still excellent.  My colour vision is excellent.  My ophthalmologist (I just keep typing that word to prove I know how to spell it now.  You try.  It’s hard!) is very surprised that my cataracts are not impacting on my vision yet. From what she can see, they should be.

So again, I’m grateful.

She asked if I have trouble with night vision.

Yes!!! I would have forgotten to mention it.  But I do get dazzled at night.  Particularly twilight.  I really can’t see.  When I’m in the car, I can’t judge distance, the lights are bright and blind me, and I am not safe to drive. So I don’t.

That’s a pretty huge inconvenience.  No driving at night.  That really kills my non-existent social life!

Oh and the last reason for the eye check is that I’m still on Plaquenil. I’ve been on it for about ten years now.  It’s the mildest of all Rheumatoid Arthritis drugs, but it can damage the retina.  Sometimes this damage is irreversible, so anyone taking plaquenil should have their eyes checked regularly.  Some doctors say every six months.  Some say every year.  Some say every two years.  Eye damage is very rare, however.

My retinas are fine.

So, once again, the news is good.  Those cataracts will need attention…but I’ve got too much going on right now to worry about ‘one day’.  And there is nothing I can do about it, except taper off prednisone.  And I’m doing that anyway.

So. Two important things, right there. Forget the medical stuff…remember this:

  1. Don’t worry about things you can’t change, and
     
  2. Live in the now. Don’t worry about things that might never happen.

 
Words to live by.

 

 

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