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Kathryn3

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 #1 
My rheumatologist has cut my plaquenil dose in half to 200mg daily . He says that after being on it for 10 years I am at a greater risk for eye toxicity issues . I can tell the difference in how I feel and it's not good . I'm thinking of getting a second opinion . By the way, the optamologist told me the exact same thing.
taffylinden

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 #2 
Hi, Kathryn3, and welcome. I hear you on the Plaquenil: it's the only lupus medication I tolerated well, and I miss it. I DID develop toxic retinopathy, and on a lower dosage after only 6 years. I am an anomaly, so don't let that guide your decision. Toxic retinopathy means damage to the retina. The retina is on the inside of your eye, on the back "wall." It has light-sensitive cells that send the images of what you're seeing to your brain. The damage from Plaquenil is permanent, and there is no treatment, so your docs are merely looking out for you. Believe me, you do not want to risk this.

As I understand it, the safe dosage recommendation, which has been changed recently,  depends on your height and weight. As your ophthalmologist about getting tested for toxic retinopathy annually while you're on Plaquenil. He/she can visually check your retina with a special instrument when your pupils are dilated, but there's a test that's a lot more sensitive. It's called an ERG. It's not a bucket o' fun, but it's not painful. There may be other tests, too. Also, is your vision normal now? One reason mine wasn't detected early was because my vision is already screwed up.

Here's a link to an excellent, easy-to-read article on it. If you have other questions or concerns, I'll try to answer them--not as a doc, of course, which I'm not, but as a patient. Best of luck!

http://www.resources.lupus.org/entry/plaquenil-and-eye-health
upstater

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 #3 
Yes...my rheumatologist told me that there were new recommendations from the ophthalmology association, so my dosage is 300mg. The pills aren't even scored yet, so I use a pill cutter.
Kathryn3

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 #4 
Thank you . I have had the ERG test done before .I just had it done 2 weeks ago and everything looks good . I certainly don't want to permanently damage my eyes so I guess I will live with my Dr's decision .Thanks again for your replies
Dolphin

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 #5 
Does anyone by any chance know or have heard which is safest high dose HCQ on it's own vs. moderate dose HCQ with very low dose prednisone (less than 5 mg)? My last rheum cut my doseage down as they said no AI. I got knee pain and heart burn/ chest pain so I had to go up to 400, which is a bit high for me as I'm under 100 lbs. Thanks ! :)
upstater

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 #6 
These are the guidelines:

Women with lupus who are OVER their ideal body weight should go by these dosing rules:
  • 5’ 7” or higher - up to 400 mg Plaquenil daily
  • 5’ 1/2” to 5’ 6 1/2” - up to 300 mg Plaquenil daily
  • 5’ or shorter - up to 200 mg Plaquenil daily
Women with lupus who are AT OR BELOW their ideal body weight should go by these dosing rules:
  • 135 lbs. or  more, any height - up to 400 mg Plaquenil daily
  • 102 lbs. to 134 lbs. - up to 300 mg Plaquenil daily
  • 101 lbs or less - up to 200 mg Plaquenil daily
Not sure what latitude rheumatologists have, however.
upstater

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 #7 
I also don't think that Plaquenil has any helpful effect on heartburn?
Dolphin

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 #8 
It might have been more pericarditis/ pleuritic type of pain, I'm not sure how to tell the difference, between that and heart burn which does respond to HCQ.  Also, muscular immflammation I think would also have responded.  I know that everyone is different, but for those of u that had the HCQ doseages reduced, did u recieve an additional medication to help with sx's ?  Like Kathryn, I don't want to damage my eyes but don't want to me miserble either :/  Thanks again, upstater for posting doseages !
Kathryn3

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 #9 
No, he didn't give me anything else to manage the pain . I had,cut back on my Advil intake per his instructions but I find myself taking it now to help with inflammation . I haven't quite figured out yet how to deal with this,. I don't have a rapport with my Dr. So I'm considering trying someone else . There is only one other rheumatologist in our area and she just opened her practice .
Cakelady

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 #10 
I have never heard about a height or weight guildlines for plaquenil
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upstater

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 #11 
I guess it's newer?? The dosing recommendations. I think people used to automatically be put on 400mg and then maybe after several years some were reduced to a maintenance dose of 200mg. My rheumatologist said that they were new recommendations from the ophthalmologist association. New enough that the manufacturers have not modified the tablets to be scored. It sounds like there might still be latitude, however, on what a rheumatologist chooses to do.
upstater

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 #12 
Sometimes I wonder if I am on enough at 300mg?? Because I am like 5'4" and 135lbs. I've been taking it about 10 weeks and feel like yuck today. The leg, wrist, hand, shoulder stiffness/pain I had in the fall, seems to be back. Especially when I first get up. Or maybe I just haven't taken it long enough? I see my rheumatologist again in a few weeks, so we'll see how I feel and what she says.
Dolphin

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 #13 
^ Don't go by me for doseages, I have more moderate symptoms but severe skin involement.    My rheumatology book The Lupus Encyopedia: says "if you are a woman between 5'1 1/2 - 5'6 1/2 inch you should take 300 mg or less a day to decrease the risk."

It appears the risk of eye damage is related to ur height and weight. Dosing by weight is new.  But unlike other meds becuase HCQ is not deposited (stored) in fat, so overweight people need the same doseage as those at the same height  but at their average or "ideal" weight.  In other words, if ur overweight, you can't take more HCQ.  However, the author recommends that underweight people should take less. 

Upstater, I hope u feel better soon and Kathyrn 3 I hope u find a good new rheum!
taffylinden

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 #14 

EDITED TO ADD: PLEASE SEE POST BELOW. THE DOSING GUIDELINES HAVE CHANGED RECENTLY, BUT THE LINK IS TO AN ARTICLE USING THE OLD GUIDELINES.

Everyone, the dosing guidelines have changed recently! From the article I posted the link to...

"The American Association of Ophthalmology recommends using the "Devine formula" to determine ideal body weight. For women, start with 100 pounds, and add 5 pounds for every inch over 5 feet. For men, start with 106 pounds, and add 6 pounds for every inch over 5 feet. The maximum dose of Plaquenil is 6.5 mg/kg of ideal body weight per day, regardless of whether a person is overweight, underweight, or normal weight. One kilogram (kg) equals 2.2 pounds."

I guess I should have posted the quotation instead of the link, but there's other info in there I thought was valuable. 

The reason for the change has to do with fat versus muscle. While plaquenil damage to vision is still very rare, docs were finding that more patients were experiencing retinal damage than the guidelines should have allowed. If docs have reduced your dosage, this may be why. 

But kathryn3, if you get the ERG or a similar test annually, and your vision is good enough for you to notice any deterioration, it might be possible to stay on the higher dose if that's what works best for you. Ask your eye doc. It's important that the lupus is controlled, too. It's a balancing act your docs will have to work out. Do they communicate with each other? If not, they should.

Dolphin

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 #15 
thanks Taffy. My book "The Lupus Encylopedia" by Dr. Thomas approved by LFA is only from 2014 and u expalined it better with the toxicity math formula.   But I think they are in essence maybe kinda  saying the same thing that overweight people can't take more HCQ and u determine the doseage by what u should weigh "ideal weight" for ur height. But ur's is saying underweight people can take their ideal body weight  which I rlly hope is true as that's wat I'm taking :)
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