Wednesday, 30 November 2011

Buggernackles and Plaquenil

I learned a new word today - the incredible Brynn who writes Lupus Interrupted used it on a comment on this blog and the word of the day is "Buggernackles."

I knew I was going to need a good word for an appointment I had this afternoon, and this was perfect.

My appointment was with my ophthalmologist. I go to him once a year because I take plaquenil.  Plaquenil is supposedly very good for lupus.  It's not necessarily so good for eyes. For years now, the good doctor has been reassuring me that macular problems from taking plaquenil are incredibly rare, and it would be highly unlikely for me to ever have a problem. I just go in each year to have the test because there is some incredibly slight (like a thousandth of a percent chance) of things being not quite right.

Every year I go in. Every year I stick my head in a white box and look at flashing lights, I have drops to dilate my pupils, I look at grids and eye charts and have more lights shining in my eyes. And every year, he says, that's fine, I'll see you in a year.

Only this year, I failed a test. It was the amsler test - all I had to do was look at a grid on a piece of paper. How hard can that be?  Well, here's the tricky bit - I had to look with only one eye at a time. My left eye passed the test - it saw a grid, no distortion, nothing unusual.  My right eye? Well it saw a grid with nice straight lines - but it saw extra "ghost" lines in between the actual ones that were supposed to be there.

My right eye failed the exam.  As every school child knows, when you fail an exam, it's just not good. Someone will say something disapproving.

What my ophthalmologist said was: "That's concerning, come back soon. We have to redo that without your pupils dilated. You can't wait this time, you have to come back soon." That's what he told me - the man who every year reassures me that what we're looking for is so unlikely he doesn't seriously expect to find anything, this year just said "that's concerning."

So, this afternoon I went back for my retest.  You have to understand that in the meantime I haven't just been doing nothing about this - I have been worrying!  I am very good at worrying - my kids believe I am the world's foremost worrying expert. If they gave out a Nobel Prize for Worry - I'd be in with a chance.

Here are the scenarios I envisioned:

  • because I had double-vision in one eye only, maybe it was neurological. Maybe lupus (or my medication) was attacking my brain.  I have a very strong attachment to my brain, and this is my biggest fear. Every time I have brain fog for a few days I start to panic about whether something bad might be happening to my brain.  Mess with any other organ, and I'm OK. I don't miss my appendix, or my uterus. (I wasn't on good terms with either when we parted company.) Just don't touch my brain, that's the best part of me. Perhaps rather arrogantly, I believe I have a very nice brain.
  • lupus was attacking my eyes, or at least my right eye. I was imagining having to learn Braille. Worse, I was imagining having to give up my driver's licence. Why I imagined them in that order, I don't know. Presumably they'd take my licence away before I needed Braille. 
  • it was plaquenil, and I'd have to give it up immediately. Plaquenil is the first lupus drug I was given. Everything else in my cocktail was added to plaquenil.  If it was the last drug added and everything worked fairly well without it - that wouldn't be so bad - but there's no knowing what the other drugs would do without plaquenil, because I've never had them without it. I was envisaging getting as sick as I was while the cocktail I'm on was being worked out. OK, I now know that's survivable - but it sure isn't pleasant. 
So that's what I was imagining on the train this afternoon.

What actually happened?

Well yes, buggernackles, I failed the same test again.


My ophthalmologist said he didn't know what it meant, but it was hoping a colleague who specialised in retinas (they have specialists who just do retinas!) was still in his office. And he made the phone call, read out my file over the phone and talked for a while.  The consensus was that neither of them is certain what's going on. The retina specialist (what do you call a retina specialist anyway?) said not to worry about it and test again in six months. 

So now, where am I?

Well both the ophthalmologist and the retina person think it's eyes. (My brain, is apparently safe from attackers at the moment. I'm keeping my guard up, though. You never know what might come after a good brain like this one.) And the ophthalmologist says it could be plaquenil, but if it is, it's not so severe that I have to stop a drug that's doing me good at the moment.

Neither of them think it's so bad that something has to be done straight away. I wasn't whisked off to the hospital emergency department - or sent for brain scans or some horrible invasive tests. No-one poked needles in my eyes or put electrodes on them. (There is a test where they put electrode things on your eyes - actually they put fine filaments across them, and flash lights and do all sorts of stuff. I've had that test once. Even if there's a risk of going blind, I am never, never, again going to sit still for someone who says "I just have to put these little filaments across your eyes, I'm afraid they'll be a bit uncomfortable." They're uncomfortable in the way that labour pain or appendicitis is uncomfortable.)

Down the track, my drug cocktail may have to be reviewed - but it looks like plaquenil isn't going to just be pulled out of it instantly. If there has to be a change, apparently it can be done gradually. 

And all the things I worried about?  Well, I've still got my brain, and my eyes, and I even get to keep my lupus medication - at least for now. I'll worry about it again when my six months is almost up. As I told you, I'm a champion worrier, and I do keep in training. Until then, all is well, despite my failed amsler test. 

Of course, I've still got concerns: about money; about trying to keep up with housework; about my kids finishing their education, getting good careers, enjoying retirement when they're old; about whether Mr Wonderful really does love me or will one day work out he could do better; about lots of other things. But hey, if I weren't worried about something, my kids wouldn't know who I was. 


  1. I'm on plaquenil as well. This post reminded me that I need to make an appointment. I've put it off for two years!! PillsnBills

  2. Hi! Nice to meet you, I'm Julie. I"m double whammied on the eyes with type 2 diabetes (controlled) and SLE (also discoid, subcutaneous) and other conditions...I also failed the Ambler Test! I see my opthamologist in a week or so-and already have retinopathy so I don't know yet if I'll need to be taken off plaquenil, our gold standard. Glad to see your blog! Love Julie

    1. Oh Julie, you really did get it from everywhere! I hope your visit to the opthalmologist goes well. Take care, Iris.


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