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aimee.x
03-13-2013, 04:50 PM
My rheumy recently upped my my plaquenil to 400mg from 200mg and so now I have to go take one of those eye exams. I've booked it for next week and I was just wondering what usually happens in them? The woman at the clinic said it would take roughly an hour and I was only really expecting 15 minutes or something.

Also I was reading around on the forums and I saw something about a 'safe dosage' for shorter people and that 400mg is only a safe dosage for people who are taller. I'm only 155cm so I was wondering if I should be taking that much plaquenil. I mentioned it to my rheumy briefly but he's been trying to lower my dosage of prednisone for a while because it'll weaken my bones in the long term if I keep taking it so he's been upping my other medication.

Thanks.

jmail
03-13-2013, 05:18 PM
The eye exam is about the most boring exam I do believe I've ever been through... It's like the peripheral vision test, which uses little red dots on a white background, to see how far to the side you can see. With the plaq test, they're little yellow lights instead, and seem to blink on and off *forever*. Then there's the usual eye exam stuff, where they put that funny machine up to the eye ball and look inside your eyes. Nothing major, just about 4 times longer than you want it to be... tic

The plaquenil is kind of rough on your digestive system, which would probably be the concern of the shorter person. Seems to me (if I remember correctly - someone correct me) that with the long-term dosing, your body "builds-up" the plaq in the system as it uses some of it, until you reach a "saturation" point eventually. Some folks don't need more than 300mg a day. Some do. Each person is different, of course. I'm at 400 a day (6'2" - 188cm??), and it's not doing enough. We were trying to get by with 10mg a day of prednisone, but 20 works much better. 20 is too high for long-term, so we're in the process of starting imuran next month to "supplement" the plaq, and maybe lower the pred dose below 5... Just consult with the doc, and pay attention to your body, letting the doc know any issues...

aimee.x
03-13-2013, 06:59 PM
Thanks jmail! I guess I'll find out if my eyes are alright next week. I was just curious because one hour sounded like it would be a really long exam and I wasn't sure if I'd have to do anything special on the day (all they told me were to bring my card and a reference letter).

When my plaquenil was increased, the prednisone was decreased to 2.5mg which I take every second day. That's been the lowest I've ever taken and I'm hoping to keep it at that amount. Methotrexate was also increased to 15mg weekly but I haven't had any problems with that either.

Mica
03-14-2013, 12:34 AM
So i'm glad you were told about going to get your eyes checked because my doctor after 5 years of plaquenil and 7 years of prednisone I was just recently told to, after my insurance cut out and I had great eye insurance but I never went because I have 20/20. My doctor knew I never went and had to nerve to scold me after I got mad about not being told from the beginning, she just assumed I know these things. Well thanks to her I now have damage I can't see how far the extent because I can't afford the specialists. Sorry this came out angrier then I expected just thinking about it still makes me mad.

steve.b
03-14-2013, 02:45 AM
the main reason it takes so long for the eye exam is that they need to dilate the eyes..... they place drops in each eye, then you need to wait about 20 minutes for the drops to work properly.

ItsLupus2007
03-14-2013, 01:05 PM
You can file the eye exam thru your medical insurance if you still have access to it and insurance will pay for it because the test is a necessity due to use of medication that can cause issue.

The dose is not height based but weight. It is more toxic in people that are under a certain weight *sorry I cant remember the pounds*.

But if anyone has been paying out of pocket for the eye tests ask the Dr office to go back thru and refile with your insurance.It may take a while but you will get back all of your money minus the copay or deductible you would have be responsible for at a specialist/regular visit if your insurance doesn't have a different amount.

Derrie
03-14-2013, 09:17 PM
The dose is not height based but weight. It is more toxic in people that are under a certain weight *sorry I cant remember the pounds*.


Actually, weight does not play a factor in Plaquenil toxicity. Fat doesn't play a role in the way the body deals with Plaquenil. It's all about how much a person would weigh with no fat-- your "dry weight," which is based on height. Currently, ophthalmologists recommend that people 5'5" and shorter should take only 300mg of Plaquenil per day, max, to minimize the risk of retinal toxicity. Those 5'6" and over can take the more common 400mg dose. Being 5'3" myself, I take 300mg per day-- a 200mg pill in the morning and half of a pill (100mg) in the evening.

The dosing guidelines for Plaquenil from the American Academy of Ophthalmology are available here: http://www.aao.org/publications/eyenet/201105/upload/CUComp-May-2011.pdf ... I would print this and give it to your rheumatologist next time you visit him, to ensure he's prescribing you the proper dose for your height.

And a lengthy discussion of this topic (including Fun With Math!) is available here: http://forum.wehavelupus.com/showthread.php?12018-Plaquenil-for-Short-People-(Newer-Dosing-Guidelines-from-Ophthalmologists)

aimee.x
03-15-2013, 12:32 AM
Actually, weight does not play a factor in Plaquenil toxicity. Fat doesn't play a role in the way the body deals with Plaquenil. It's all about how much a person would weigh with no fat-- your "dry weight," which is based on height. Currently, ophthalmologists recommend that people 5'5" and shorter should take only 300mg of Plaquenil per day, max, to minimize the risk of retinal toxicity. Those 5'6" and over can take the more common 400mg dose. Being 5'3" myself, I take 300mg per day-- a 200mg pill in the morning and half of a pill (100mg) in the evening.

The dosing guidelines for Plaquenil from the American Academy of Ophthalmology are available here: http://www.aao.org/publications/eyenet/201105/upload/CUComp-May-2011.pdf ... I would print this and give it to your rheumatologist next time you visit him, to ensure he's prescribing you the proper dose for your height.

And a lengthy discussion of this topic (including Fun With Math!) is available here: http://forum.wehavelupus.com/showthread.php?12018-Plaquenil-for-Short-People-(Newer-Dosing-Guidelines-from-Ophthalmologists)

My rheumy seemed like he was aware of it though and he said something along the lines of "We'll just see how this turns out" so I'm assuming it might be temporary until I get off prednisone (hopefully). I think I'm like 5'1" and I weigh 51kg.

Derrie
03-15-2013, 05:52 AM
My rheumy seemed like he was aware of it though and he said something along the lines of "We'll just see how this turns out" so I'm assuming it might be temporary until I get off prednisone (hopefully). I think I'm like 5'1" and I weigh 51kg.

According to my ophthalmologist, the important thing is not to be on too-high a dose of Plaquenil for too long. So if you're on 400mg for a little while, probably no big deal, but in the long term, us short people need to be on a lower dose.

I hope it goes well for you to wean off the prednisone!

tgal
03-15-2013, 07:28 AM
I will add here that plaquinel dosing is like everything else. Some doctors believe the new study about shorter people taking less and some don't. Some still believe that plaquenil is the best thing we have with the fewest side effects and believe in the higher doses. At this point I don't think there is anything to be too scared of. I have been on 400 for 5 years and am 5'2. I have had no issues with my eyes except from inflammation.

I say if you trust your doctor then follow his lead unless something happens to change that. Keep doing what you are doing though. Stay knowledgable about all things lupus so you know the right questions to ask

ItsLupus2007
03-15-2013, 10:52 AM
I was pulled from Plaq about 2 yrs ago due to unresponsiveness and switched to Aralen.

I am 5'10 and currently weigh around 180 which is about 15pds higher than normal so I am in the safe range regardless of height/weight base but thank you for putting the link if I needed it to present to my Rheumy. I appreciate it. I don't think fun & math should be in the same sentence :). I have always been mathematically challenged! LOL!

jmail
03-16-2013, 12:51 PM
The thing about numbers and math, ItsLupus2007, is that math and numbers make sense. Lupus does not... lol - my wife claims to be mathematically challenged, and yet she'll reel-off all this stuff when I'm trying to help the 10 year old "no no no. don't listen to him Nicolas, your dad will mess you *all* up!"... lol

Derrie
03-16-2013, 01:38 PM
I don't think fun & math should be in the same sentence :).

C'mon I can't be the only one who has fun with math... ;)

ItsLupus2007
03-18-2013, 09:06 AM
C'mon I can't be the only one who has fun with math... ;)

LOL! My DD is doing math work in middle school that I *swear* I don't remember even hitting until high school. I dread the next few yrs if this continues- I just look at it and can hear my brain go *zzzzaaaappp* and smell something like it is either my brain on fire or possibly the smell of fear in the air radiating from me. :)

ItsLupus2007
03-18-2013, 09:10 AM
The thing about numbers and math, ItsLupus2007, is that math and numbers make sense. Lupus does not... lol - my wife claims to be mathematically challenged, and yet she'll reel-off all this stuff when I'm trying to help the 10 year old "no no no. don't listen to him Nicolas, your dad will mess you *all* up!"... lol


See I read the problems/equations whatever and it is like I have a mental mind shield that allows no further entrance other than the eye socket. It never enters the brain *I don't think* if it does it runs away quickly. Sometimes I have to use the cheat answers in the back of the book to try and figure out how the formulation is supposed to go as the book DD is working out of has few/no examples and is very hard to work with. It makes me itchy. :)

sfruth
03-18-2013, 10:37 AM
My rheumy required the baseline eye exam before I started the plaquenil, and the ophthalmologist scheduled a 6 month follow-up, which I had 2 weeks ago. (Same exam my husband has for his borderline glaucoma and family history of macular degeneration, except inclusion of a color blindness test.) My next exam is in a year. She explained that the issue is deposits of whatever in the macula as time goes on. My rheumy plans on my being on plaquenil for 2 years- I'm taking 400 mg a day (I'm 6'0"). It's made a significant improvement in my hands, but the swelling isn't totally gone- what is there seems to fluctuate a bit.