Retina Specialist Appointment

I have "ocular toxicity" due to prolonged use of Hydroxychloroquine... 

otherwise known as:

The physical health of my eyes are that of a

55-60 year old.  

(for those who are not sure of my age, 
that's a good 20+ years ahead of my time)

And here's the really unfortunate part:

It's all drug induced. 

I have been on this drug since 2007.  The only times I have not taken it were during each of my pregnancies.  But other than that, it has been the standard dosage of two - 200 mg tablets, twice a day.

And the crazy thing is, I have had eye exams every year since 2007.  There has never been any signs of toxicity or even worsening of my eyesight.  It wasn't until the end of January of this year, that I even started noticing the blurriness.  And because I was due for my yearly eye exam, I went in for a check up.  

Kind of felt like this:

Gotta find the humor in it, right?  

Ocular toxicity is listed as a possible side effect.  But it is rare, less than 1% of patients end up with it.  And usually those patients have been taking this drug for 15-20 years.

But he believes it's a direct response to the kidneys failing and the high blood pressure as to why it has now started to affect my eyes.

I asked if it was reversible now that I've stopped taking Plaquenil

He said unfortunately not. The damage is done.  It's permanent, irreversible, UNTREATABLE and probably not over yet.

I asked what he meant by that last part.

He said there's a good chance that however much is still in my system, can still cause further damage and destruction to my eyes.... even though, I'm no longer taking this drug.

AWESOME.

Doc says its a 50/50 chance and all we can do about it is SIT BACK AND WAIT.  

...couldn't resist...

I asked about my actual eyesight.  He said luckily I had really great eyesight before I was diagnosed with lupus... that is the ONLY thing he can come up with as to why my eyes have lasted this long and what might keep them from getting worse.  But he said the best thing is to get my kidneys functioning again and get my blood pressure down.  The sooner I do that, the better chances my eyes have of staying only 20+ years worse than they are until my physical age catches up with them.

I asked him what signs I could look for to know if/when my eyes are getting worse and he asked me to check for wavy lines on an Amsler grid every day and as soon as those lines become wavy to make an appointment with him within the week and we will discuss some options.

So me and Betty White will be checking our Amsler grids on a daily basis!

Who doesn't love Betty White?!

This doctor was so cool!  He answered all my nerdy questions and went into detail what he was seeing and why this was happening and it just felt like I went to a seminar instead of an eye appointment.  I know, I know I'm a huge dork.

I asked him if I could have copies of the photos of my maculas because I knew Dr. Emma would want to see them.  And he not only let me take screen shots with my phone to show her immediately, but then told me to give my email address to his secretary so she could send me scans!  He said he's never had a patient ask for the actual photos before! 

I just laughed and said you have no idea how closely I track my health!  Perhaps I should show him my lupus binder and journal! 

Here are the photos of my left eye, since that one is worse than my right eye.

Dr. Emma and I LOVE this one!  

That's what the back of my eye looks like!

At any rate, he said at this point the damage done is mild/moderate.  So for now the glasses are correcting the blurriness and that's good enough for me.  No sense worrying about what will happen to my eyes down the road.  I know what to look for and I know what my odds are.

Besides, as long as I can still see 

Emma being the sweetest big sister ever

and 

Brooklyn looking this ridiculously cute

The rest of the weekend shall be spent saving my energy, spending time with Brian and the girls and getting ready for Chemo Session #3 bright and early Monday morning.

Thank you for all the prayers and continued outpouring of support!  

Thank you for sharing my blog and helping me raise awareness.  If ever there is a post to share, I urge you to share this one.  If you or someone you know is taking Plaquenil, please consider bringing up the risk of ocular toxicity with your doctor at your next appointment.  It may be a rare side effect, but it CAN DEFINITELY happen.  You might just prevent this from happening to someone else.