Seeking Spoons: Spoonie Awareness & Support
About This Show
This show is about autoimmune disease & invisible or chronic illness and longterm pain / fatigue. It's for anyone but specifically for spoonies who live with these conditions. Support, awareness, education and hope.
Most Recent Episode
Plaquenil Part 3 . Ocular (eye) concerns & testing for vision.
May 14 16
This is part 3 of a 4 part series about Plaquenil. In part 1 I
gave an introduction to Plaquenil and its use in autoimmune
disease. In part 2 I discussed more about the medication
including dosage options and possible side effects. In this section
I'm going to discuss ocular concerns and testing that should be
considered with Plaquenil therapy. Additionally, I will explore
more comprehensive eye considerations for Plaquenil in part 4.
Welcome to the seeking spoons podcast. My name is Barbara Grubbs
and I'm an autoimmune disease warrior (or "Spoonie"). I'm also a
licensed nurse practitioner. My goal in providing you this
information is to share my individual experience with Plaquenil and
what I've learned about it from speaking with others who take it. I
am absolutely NOT giving you any medical advice and this is only my
personal account of what I think about the drug. Please always
consult your specific qualified healthcare practitioner before
making any decisions on your medical management.
Be sure to visit seekingspoons.com often to look
for updated Spoonie information and check out spoonmeter.com to see my awesome
spoon meter tool!
Now, let's spend some time talking about the ocular (eye)
complications and testing you should consider with Plaquenil.
Vision changes or loss of vision are rare but there is
definitely a risk of both associated with Plaquenil. This is
especially so for people who have been on high dosages or have been
on Plaquenil for several years. An increase in the risk of retinal
toxicity is most correlated with use of Plaquenil following 5-7
years of medication use. The risk of retinal damage is why you must
see an ophalmologist prior to starting Plaquenil and then regularly
while taking it. Plaquenil has a long half life and takes time to
fully be eliminated from your body. Consequently the damage may
very well be permanent or even continue to progress after you stop
it. So Plaquenil retinopathy is not a minor side effect and you
need to take regular eye exam checkups seriously.
Most ophalmatologists will want, at a minimum, an annual dilated
eye exam and color blindness scree