As I mentioned last week, I was just at my rheumatologist's for a flare and he upped by dosage of Plaquenil (to 200mg twice a day, instead of just once a day). He reitterated that Plaquenil is safe during pregnancy, so he was hopeful that it would work for me and be a long-term drug.
A couple of days after starting the higher dose, I was having trouble sleeping, so I went to check out the prescribing information to see if it was a side effect. Turns out - no, sleeplessness is not a side effect of Plaquenil. BUT, I did find a section (in the Sanofi-Aventis prescribing info) that stated:
"Usage of this drug during pregnancy should be avoided except in the suppression or treatment of malaria when in the judgment of the physician the benefit outweighs the possible hazard. It should be noted that radiactively-tagged chloroquine administered intravenously to pregnant mice passed rapidly across the placenta. It accumulated selectively in the melanin structures of the eyes and was retained in the ocular tissues for five months after the drug had been eliminated in the rest of the body."
So at this point, I'm like - WTF? I don't want to risk a baby's eyesight! (For those of you not familiar with Plaquenil, it can build up in the eyes and cause damage. Plaquenil users like me need to have yearly eye exams to make sure it's not causing any damage.)
But, I really do trust my doctor and didn't think he'd lead me wrong, so I decided to do some research.
When you start poking around for this info, you find a lot of pros and cons, yeses and nos all around.
On the Johns Hopkins' site about rheumatoid arthritis drugs, they state that DMARDs should be stopped during pregnancy, but then in the next sentence say that "Hydroxychloroquine (Plaquenil®) is probably the safest DMARD for use during pregnancy." Then there's this article from the Lupus Foundation, in which a Johns Hopkins' doctor says she also continues Plaquenil during pregnancy because the risk of flare is more significant than the risk of side effects.
I finally found this article that indicates Plaquenil is considered an appropriate option for pregnant & breastfeeding women when needed. It states that the build up in the eyes was actually from a related, but more toxic, compound of the drug. Chloroquine (the drug referenced in the above the prescribing info) is not the same as hydroxychloroquine, which is what's in Plaquenil.
And the FDA says Plaquenil is a category C, which basically means you can use it if the risks outweight the benefits.
But, how long did it take me to find that? A while! It'd be nice if these "expert" sites (Johns Hopkins) and the prescribing information itself would be a little less CYA (cover your a**) and present all the info. But, working as a writer and dealing with CYA issues myself, I guess I understand. I'm just glad I know how to dig down through the research a little more. I hope my recap here will help someone else, too!