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Derrie
06-13-2012, 09:32 AM
So, I got my first Plaquenil eye exam today, and the first thing the ophthalmologist asked me was, "How tall are you and how much Plaquenil do you take?" I told her "Five foot four, and 400 mg per day." She nodded and said, "You're taking too much."

She went on to explain to me that 400 mg per day has been the standard Plaquenil (hydroxychloroquine) dose for ages, based on the guideline of 6.5mg/kg/day being a safe dose. However, because Plaquenil is not absorbed into fatty tissue, she said, the weight used for determining a safe dose should be our "dry" weight-- that is, how much we would weigh without fat. So, she said, recently Ophthalmologists have recommended that dosing be based on height. For people 5'6" and taller, 400mg is a safe dose. But for us shorter folk, regardless of how much we actually weigh, we need to be on a lesser dose. She told me I should start taking 300 mg per day instead of 400 mg because 400 mg is "too much for a little person" like me, and staying on the higher dose would increase my risk of Plaquenil toxicity and eye damage.

I have a call in to my rheumatologist to confirm lowering the dose is okay with him, but I wanted to share this information with everyone because apparently these new dosing guidelines have been slow to be adopted by rheumatologists because they're so used to prescribing 400 mg per day. I've done some research online, and I found a good article from the American Academy of Ophthalmology that discusses the new dosing guidelines, which is available at http://www.aao.org/publications/eyenet/201105/upload/CUComp-May-2011.pdf.

So, if you're a shorty (under 5'6"!) on Plaquenil, and you're taking more than 300mg/day, I'd recommend you talk to your rheumatologist about lowering your dose to a level more appropriate for your size. Though Plaquenil toxicity is rare, it would really suck to go partially blind years down the line!

Mica
06-13-2012, 12:37 PM
So, I got my first Plaquenil eye exam today, and the first thing the ophthalmologist asked me was, "How tall are you and how much Plaquenil do you take?" I told her "Five foot four, and 400 mg per day." She nodded and said, "You're taking too much."

She went on to explain to me that 400 mg per day has been the standard Plaquenil (hydroxychloroquine) dose for ages, based on the guideline of 6.5mg/kg/day being a safe dose. However, because Plaquenil is not absorbed into fatty tissue, she said, the weight used for determining a safe dose should be our "dry" weight-- that is, how much we would weigh without fat. So, she said, recently Ophthalmologists have recommended that dosing be based on height. For people 5'6" and taller, 400mg is a safe dose. But for us shorter folk, regardless of how much we actually weigh, we need to be on a lesser dose. She told me I should start taking 300 mg per day instead of 400 mg because 400 mg is "too much for a little person" like me, and staying on the higher dose would increse my risk of Plaquenil toxicity and eye damage.

I have a call in to my rheumatologist to confirm lowering the dose is okay with him, but I wanted to share this information with everyone because apparently these new dosing guidelines have been slow to be adopted by rheumatologists because they're so used to prescribing 400 mg per day. I've done some research online, and I found a good article from the American Academy of Ophthalmology that discusses the new dosing guidelines, which is available at http://www.aao.org/publications/eyenet/201105/upload/CUComp-May-2011.pdf.

So, if you're a shorty (under 5'6"!) on Plaquenil, and you're taking more than 300mg/day, I'd recommend you talk to your rheumatologist about lowering your dose to a level more appropriate for your size. Though Plaquenil toxicity is rare, it would really suck to go partially blind years down the line!

Ugghhh my doctor tells me nothing, i'm barely 5 foot and have recently found out the plaquenil is starting to mess with my eyes.

chikititalinda
06-13-2012, 12:44 PM
If thats the case Im screwed too, I'm 4'10 lol, and I've noticed my vision is becoming worse, blurry and I can barely see at night, i've put off and eye test because it's not covered until next year, and I've got contacts and glasses to last me until then, man this sucks!

Derrie
06-13-2012, 03:03 PM
So, my rheumatologist's office called back and confirmed I should lower my dose. I'm now supposed to take 300 mg per day, 200 mg in the morning and 100 mg in the evening. I'll just have to cut one of my 200 mg pills in half for the evening dose.

Mica and Linda, I really encourage both of you to print off that article I posted and share it with your doctors. The problem seems to be that the new dosing guidelines were developed by Ophthalmologists (who are the experts when it comes to Plaquenil toxicity), and the information hasn't completely made its way across the specialty divide to all the rheumatologists. By sharing this information with your doctors, you could actually be doing other patients in their practices a favor if they shift their dosing guidelines for most people!

From what I can tell, Plaquenil toxicity is still quite rare (even for short folk), but our risk is further reduced by taking the appropriate doses.

rob
06-13-2012, 05:37 PM
Interesting stuff. It makes sense. I wonder how they figure out your "dry weight".

I'm 6' 1" tall and 200lbs, and my body fat percentage is 14%.

I take 400mg plaq per day. 200mg in the morning, and 200mg at night.

I wonder if there's formula to figure out the recommended dosage according to these newly revised standards.

Hunniebun
06-13-2012, 08:36 PM
I wonder how they'd figure it out with me...I stand 5 foot 3 and I have pretty much zero body fat lol...Well unless you count my butt. The most Plaque I am gonna take is 200mgs because that's all my stomach can handle.

tgal
06-13-2012, 11:25 PM
Great info! Thanks for sharing!

debbie-b
06-14-2012, 04:08 AM
Interesting stuff. It makes sense. I wonder how they figure out your "dry weight".

I'm 6' 1" tall and 200lbs, and my body fat percentage is 14%.

I take 400mg plaq per day. 200mg in the morning, and 200mg at night.

I wonder if there's formula to figure out the recommended dosage according to these newly revised standards.


It sounds, like you are a hunk.

Debbie

Derrie
06-14-2012, 06:10 AM
Interesting stuff. It makes sense. I wonder how they figure out your "dry weight".


Sounds like you're fine on the dosing, Rob.

So, my understanding of how this works is the "dry weight" is standard for everyone. It's the "lean" weight based on your height. For women, that weight is 100 lb at 5'0" and you add 5 pounds for each inch in height. So, every female who is 5'4" has a "dry weight" of 120 pounds.

For men, the dry weight is 110 lb at 5'0", and add 5 pounds for each inch. So, Rob, you're 13 inches taller than 5'0", so your dry weight would be 110 + 65, or 175 lb.

So, you take whatever dry weight is appropriate for your sex and height, and then apply the 6.5mg/kg/day standard. To satisfy my inner math geek, I'll do Rob's calculation here:

At 6'1" and male, Rob's "dry weight" is 175 lb. Converted to kilograms (1 lb = .454 kg), Rob's dry weight is approximately 75 kg. At a safe dose of 6.5mg/kg/day (6.5 X 75), Rob can take up to 487.5mg of Plaquenil per day without significantly increasing his risk of toxicity and eye damage.

Using the same calculation (dry weight x .454 x 6.5), my highest safe dose, as a 5'4" female, would be 354mg of Plaquenil per day.

Well, my inner math geek is satisfied. Make sense to you all? Our real weights don't matter in this calculation; just our sex and height.

magistramarla
06-14-2012, 09:03 PM
Derrie,
My ophthalmologist mentioned this when I saw him in February. You are right - they are the real experts about this.
Like Hunniebun, my tummy can't handle more than one 200 mg. pill per day, so he's pleased that I'm on that dose.
I tried to bring it up at my rheumy appointment yesterday, but she wasn't interested and didn't take time to discuss it.
Man, I'm thankful for my ophthalmologist.
BTW - I agree - Rob sounds like the hunk of WHL. Karen is a lucky lady and she should hang on to him!
Hugs,
Marla

rob
06-14-2012, 10:39 PM
Well, I don't really know about the "hunk" part, but I do still have all my hair, most of my teeth, and I'm housebroken... (insert smiley face)

Derrie
06-15-2012, 05:30 AM
Housebroken is the key.

steve.b
06-15-2012, 06:24 AM
..... and I'm housebroken... (insert smiley face)

i would love to add a smart alec comment.
but i will smile and keep quiet.

rob
06-15-2012, 07:46 AM
Sounds like you're fine on the dosing, Rob.

So, my understanding of how this works is the "dry weight" is standard for everyone. It's the "lean" weight based on your height. For women, that weight is 100 lb at 5'0" and you add 5 pounds for each inch in height. So, every female who is 5'4" has a "dry weight" of 120 pounds.

For men, the dry weight is 110 lb at 5'0", and add 5 pounds for each inch. So, Rob, you're 13 inches taller than 5'0", so your dry weight would be 110 + 65, or 175 lb.

So, you take whatever dry weight is appropriate for your sex and height, and then apply the 6.5mg/kg/day standard. To satisfy my inner math geek, I'll do Rob's calculation here:

At 6'1" and male, Rob's "dry weight" is 175 lb. Converted to kilograms (1 lb = .454 kg), Rob's dry weight is approximately 75 kg. At a safe dose of 6.5mg/kg/day (6.5 X 75), Rob can take up to 487.5mg of Plaquenil per day without significantly increasing his risk of toxicity and eye damage.

Using the same calculation (dry weight x .454 x 6.5), my highest safe dose, as a 5'4" female, would be 354mg of Plaquenil per day.

Well, my inner math geek is satisfied. Make sense to you all? Our real weights don't matter in this calculation; just our sex and height.


Sounds like a solid formula. My inner science geek thanks your inner math geek!

cyberqueen
06-21-2012, 03:42 PM
This is good to know! I'm not on Plaquenil now but given my recent additional diagnoses know that a complete re-vamp of my meds is in my immediate future (arrgh!) Thanks for the info - I'm just under 5' 4" and had no idea about this! Course the body fat % should not be a problem unfortunately- got plenty of that floating around :-)

I'm not short; I'm "under tall". :-)

OmaLaura
07-08-2012, 12:58 PM
I too had never heard of this. Wow! Why don't the rheumy's know this and the pharmacists? I have been on Plaquenil (and then on the generic) now for 18 years. I am 5'2" and tiny boned and was presribed 200mg 2x day. Is this maybe why my vision is getting worse and worse and I developed astygmatism? Too scary. Have only had the field of vision test done 4 or 5 times over the years.
Thanks for posting this information.

gentle hugs and warm thoughts for all,
Laura