I read many articles here about people taking 400 mg of plaquenil/ Hydroxychloroquine a day.
We have to remind The rheumatologists that the dosage was updated in 2011. By The ophthalmology studies and the plaquenil toxicity to our eyes affecting our Peripheral vision loss, if there is too much in body.
We do have to get a yearly “Peripheral vision test by the ophthalmologist” and adhere to the new 2011 guidelines mentioned in the Above article.
5’ 7 and above = 400 mg per day
5 1/2 - 5.6 1/2 = 300 mg per day
5.0 and below = 200 mg per day
If you are “below” your “ideal body weight”, for your height, then they would use weight as a guide. But according to guidelines, most people are above what “they consider ideal body weight”.
It just seems like there’s a lot of confusion still out in the Lupus community – we have to take care of our health, we have so many problems – but the last thing we need is to lose our peripheral vision and “not be able to take plaquenil anymore”
We have so many great posts by many of the people living with Lupus, we have to share together and learn from each other and stay on top of the progress that others have made and ideas that may help us.
This is just one that is a factual component of living with Lupus that we need to adhere to and all our doctors need to make sure that we are on the correct dosage by “height not weight”. 💜💜💜
Have a wonderful day, and if today is not good, rest, rest and let’s hope for tomorrow to be better.😊
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Djlr
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Hi Djlr, THANK YOU VERY MUCH, for posting this very vital information. 😊😊 I agree that there is so much going on in our lupus lives that it is not very easy to be proficient in whats this and that in the medical world. So as you posted ,if I am 5.61/2, then Anyone that height should only be on 300 mg's of Plaquenil a day. If we are not, should we call or speak to our prescribing Dr's about this? This is important news for all of us. Personally, my peripheral vision is already compromised because of connective tissue disease, and failed cervical discs, as I am sure many of us here have some of the similar problems. Keep us posted, thank you for pointing out how mindful we all need to be to help each other out. Keep passing it on. peace, healing , blessings thestorm
Yes you are correct – we have several of lupus members that had to print the information out and take it to the doctor to go over with them. And they lowered it to the specifications in the article.
They’re trying to help us by giving us plaquenil knowing that it is the easiest drug on our bodies other than some of the harsher drugs that we might take; but it can be detrimental to our eyesight, if we go over what our bodies can actually handle. Thus, it becomes toxic.
The article that I posted from the Lupus Foundation, discusses how it was affecting one person and her eyesight.
This example gives some clarity as to the symptoms to be looking out for such as: not being able to distinguish the color red as well, night vision being affected, digital clock numbers not being as clear, etc.
This article indicates that we may have these clues well before the ophthalmologist will catch the toxicity, therefore our dosage could be lowered a little and not completely stopped, if they catch it before major damage happens.
You are right at the border at 5 ‘ 6 1/2 inches – just bring the article and discuss it with your doctor “and” discuss it with your ophthalmologist. That discussion will override the rheumatologist, when they send their notes back to the rheumatologist “if you are having any symptoms” or they think a lower dose is better for you “based upon your history” of peripheral vision problems already.
Yes, we “have to stay proactive”, we are hard for the doctors to work with as they try to help us the best they can, but sometimes they just don’t have answers for us.
And sometimes, things work for a while and then they stop working. Our bodies have a way of becoming more sensitive to drugs as we progress living with Lupus. That’s why we have to be so careful reading and learning as much as we can to get ahead of the game.
I am glad you were going to take a step forward, I wish you much luck in finding the correct path and using Plaquenil to treat your Lupus Symptoms.💜
Great post Djlr I would have never have known and being on plasmaquine for many years which has same consequences if not more I sincerely appreciate the read. I do thank goodness get a yearly check for my 👀. Thank you 🙏 🤗
Thanks for putting this information out there. I;m no longer take hydroxychloroquine through choice. Time will tell whether my alternative diet and natural supplements are enough to make joint pain and fatigue manageable. I believe the drug is still in my system because I only stopped taking it on 4 June having taken it for 7 1/2 months with many side effects. I thought the symptoms were the lupus evolving in my body until I did a lot of research on the drug. I totally agree information gives us an element of control and allows us to support each other. Again many thanks,
Yes, I do know some lupus patients that cannot take it because Their bodies cannot tolerate it at all.
Do work with your doctor, making sure that you are taking alternative measures. But of course eating a healthy diet is extremely good for all of us.
And yes, since it takes 4 to 6 months to get into your system to be totally effective , it will take several months for it to possibly come out of your body to where you will feel more joint pain -possibly again, if it indeed had Helped with your joint pain, or other Lupus symptoms.
Lupus does affect any organ in the body, so I would definitely be keeping a diary of what you are experiencing so that you can share that with your doctor.
Some of the Symptoms you had could’ve been due to the Hydroxychloroquine or “may just be the Lupus acting up in your body”.
Just be careful, because Lupus can progress throughout the years and keeping your doctor in the loop is the best way to handle the situation.
Wishing you better days on your lupus journey and keep “educating yourself” as much as possible about how Lupus does and can affect the body. 💜
Thank you for posting this. My doctor and I discussed this for weeks because I tend to drop weight quickly due to malabsorption. So sometimes I am definitely underweight and sometimes I’m on the line. I took a screenshot of this so I can keep it on the fridge. I alternate between 300 and 400 depending on if I get underweight. He didn’t want me doing that but I’m my own best friend. Thank you again. Best regards to you!
Yes you are you’re a best friend – and we know our bodies better As we are watching ourselves every day and how we react to certain medicines, or weight fluctuating as you indicated, how certain foods affect us, a certain medications affect us,etc.
It would probably be advisable just to keep a record of your daily weight so you can maybe see what your average is and that might help you when your doctor reviews your weight. If you are bouncing between 200, 300 and 400 mg as a daily dose – (Add your weight & divid it by 30 to see what your monthly averages is) instead of just the what you weigh on the day you go to the doctor.
That might help him/her understand why you are adjusting it regularly.
But if it’s based on “height for you” and you’re not too far under “your ideal body weight” this should give you a better gauge for your correct dosage.
Charts below to review what (they) think is Ideal Body Weight:
As I understand it the guidelines changed recently, as a result of a report in America that suggests the rare risk of retinopathy is more common than originally thought. They think that as the risk is higher if on higher doses and for long periods of time. The 2011 guide to dose suggested
For Adult 200–400 mg daily, daily maximum dose to be based on ideal body-weight; maximum 6.5 mg/kg per day. I think that as a result of the American study GMC are advising aim for lower doses with maximum 5mg per kg of body weight ....in reality this has resulted in many people 12 stones or less having their dosage reviewed.
The royal college of opthalmology also revised their guidelines for screening in 2018... everyone is now expected to get specific specialists eye checks including retinal photos as a "baseline" when first put on hydroxychloroquine ( within the first 12 months) and then again if still on hydroxychloroquine 5 years later, and then every year afterwards.
My UK rheumatology consultant was aware of this and I've recently had the special eye tests....they had to be done by hospital opthalmology department and included tests where they put eye drops in ( these make your eyes blurry for a while and more sensitive to light). I think the eye drops give you a better retinal examination. I'll try see if I can find links to these guidelines
I think although it is rare it's certainly worth "being on the safe side". I've been on hydroxychloroquine 16 years, the last few years reduced dose to 200mg on alternative days. I've always also had annual eye tests with high street Specsavers opticians who always did extra tests knowing I was on the hydroxychloroquine ....my rheumatologist always advised that. Specsavers did visual fields, a basic retina photo, and Amsler grid, some opticians would also do a colour vision test as they thought that could help pick up very early changes too
You can also download an Amsler grid to do a basic self check
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