Hydroxychloroquine v methotrexate

@mah7925

I was overdosed by 25% with 400mg a day, but I spotted it at 6 weeks and reduced my dose to 300mg.

Both UK and US have the same advice, a safe dose for eyes is a maximum of 5mg per kg (2.25lbs) of bodyweight.

In the UK, they just bung people on 400mg even though the NHS advice in general and the specific advice from the Rheumatology department I was referred to is very easy to find and very clear.

And I was overdosed in spite of already having eye issues. I was furious about it.

Frankly it's a LOT more dangerous to eyes than they tell you. Perhaps 1 in 100 people will have changes on scan within a year. One in 13 will have irreversible retina damage on scan after 5 years.

And although that doesn't immediately noticeably affect vision, the damage can continue to get worse even though the drug has been stopped. And even if it doesn't do that it gives you a head start in the damage which will be caused by getting old and is resulting in older people having worse sight loss than they need have.

@mah7925
Hey there!
I have been on Plaquinil 15 years. 200mg daily . I weigh 165. I purposely started with the lowest dose, and that worked well for me . My rheumatologist feels I can drop down to 200mg every other day. So I am starting that routine on 1/1.
Absolutely best to see an ophthalmologist! I see mine twice a year. So far no issues with retina .
All the best 🙏🏻

There is lots of other research, but this is a nice succinct report from an arthritis source.
https://www.arthritis.org/drug-guide/medication-topics/hydroxychloroquine-may-put-eyes-at-risk

@kensiejames what are you taking it for? RA? Keytruda side effects like me?

I'm another one with retinal toxicity after being on 400mg daily for 12 years. I am short, 5 ft3/4 inch and weighing roughly 52 Kg /115 pounds or slightly less at times. I started taking it in 2000 and quit taking it in 2012
I researched the drug at the time it was first prescribed and I didn't find any dose recommendation according to weight suggestions.

First dosage to weight suggestion occurred in 2002

Then in 2011 they made changes to those weight to dose suggestions.

At that time they said a maximum dose of 400mg per day was safe unless a person was short .
For a short person 6.5mg /Kg based on ideal weight, not actual weight was to be used .
They said if a person was very thin/ underweight, calculated on actual weight resulted in too large a dose
I was not underweight, so dosing at the ideal weigh happened to be what I weighed and I should have been taking a maxium dose of 323 mg per day.

And then in 2016 their were new suggestion again this time using real weight was under 5mg/Kg.

It is the cumulative dose that gets you into the danger zone. The cumulative dose of plaquenil is not stored in fatty tissue ,only lean tissue. And so whether a person is overweight or normal weight also effects how fast the cumulative doses get you into the danger zone.

I have been on Plaquenil for years for PA. Previous took Methotrexate and caused liver damage leading to transplant. Be very careful with Methotrexate. Requires careful monitoring.