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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

My rheumatologist that just retired had prescribed me 1 1/2 hydroxychloroquine a day even though it was a little high for my weight of 123.

A MyLupusTeam Member asked a question 💭
NC

I didn’t ever start it but I feel like I did so much better on a higher dose which years ago was 2aday. I now weigh 118. I am afraid to start taking that even though I think I would feel better because of my eyes. I have taken it for 27 years.

October 5
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Answer Summary

Members shared their personal experiences with hydroxychloroquine (HCQ) dosing and weight-based adjustments, with many noting their doctors... Read more

Members shared their personal experiences with hydroxychloroquine (HCQ) dosing and weight-based adjustments, with many noting their doctors had reduced their doses over time due to eye safety concerns. Several members described getting regular eye exams every 6 months to a year as an important step in monitoring for vision problems, and one member mentioned that eye issues can take about 5 years to emerge. A recurring theme was the importance of working closely with a rheumatologist to find the right dose balance between managing lupus symptoms and protecting long-term eye health.

MyLupusTeam

It's completely understandable to feel torn — you know your body well after 27 years, and remembering how much better you felt on a higher dose is really meaningful information. Your concern about your eyes is also very valid and worth taking seriously.

The risk of eye damage from hydroxychloroquine is higher for people who:

Show Full Answer

It's completely understandable to feel torn — you know your body well after 27 years, and remembering how much better you felt on a higher dose is really meaningful information. Your concern about your eyes is also very valid and worth taking seriously.

The risk of eye damage from hydroxychloroquine is higher for people who:

- Take more than 400mg per day
- Have used it for longer than five years (you're well past that!)
- Are older than 60
- Have reduced kidney function
- Have a history of retinal disease Since you've been on hydroxychloroquine for 27 years, regular eye monitoring is especially important. The American Academy of Ophthalmology recommends comprehensive eye exams at least annually for long-term users like yourself.

Before restarting or adjusting your dose, it would be really worth seeing a new rheumatologist who can review your full history and weigh the benefits against the eye risks specific to you. A retinologist visit alongside that conversation could give you much more confidence in whatever dose you move forward with.

Don't start the higher dose on your own — but do advocate for yourself with a new doctor, because feeling well matters enormously too! 💙

October 5
A MyLupusTeam Member

400 not 499

October 13
A MyLupusTeam Member

I would love to be able to take 499 mg again. At least during times I’m having more pain.

October 13
A MyLupusTeam Member

I wish I could get around seeing one. My state doesn't attract the best trained in Rheumatology.

October 5
A MyLupusTeam Member

I refuse to see a rheumatologist! I'll stick with the Internal MD... Lupus Nephritis MCTD Raynauds Sjourns and it sucks! 400 mg HCQ daily with a yearly eye test that drives me nuts!

October 5

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