Overreaction to HCQ, what next?

I have been on that same dose of HCQ for more than 6 years for my lupus, with no issues. I just recently have a retinal scan and all was clear for my eyes, no signs of toxicity. I also was on methotrexate injections. It was working great, but then I had a breast cancer diagnosis, and the doctor took me off that immediately in 2018. We switched to Leflunomide (brand name Arava) an that has been working fine with no issues. I might suggest finding another doctor that you trust, if that is an option. Wish you the best.

Here in the U.S., the dose you were on is pretty routinely prescribed without regard for what the patient weighs.
I was put on that dose in 2000 and I am a very small person, weighing 112 or slightly less. Two different rheumatologists prescribed that dose.
I was on it for 12 years at which time my visual field exam detected retinal toxicity and so then I discontinued it.
I then tried Methotrexate but was allergic to it. As I remember, my dose was 10mg weekly. The suggested starting dose for MTX is 10mg-25Mg. weekly.

And yet even the US guidance notes I can find say that 5mg/kg bodyweight is the absolute maximum HCQ that is "safe" for eyes.

Honestly, on both sides of the pond medics are taking known risks with people's sight.

I hope your sight stays stable now you're off it. I will use a wheelchair before I would take another milligram of the stuff.
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Since discontinuing it, I have had no further deterioration in my eyes .
My daughter is taking plaquenil now. The person , a nurse practitioner, did adjust her dose according to her weight. And told her if she lost weight he would have to re-adjust the dose. She is not small like I am and is quite overweight. I don't know what her dose is.
I'm wondering if the dose adjusted for weight is a newer guideline. When I was initially prescribed it, I did do some online checking and never found anything mentioning that the dose should be adjusted for weight.
And then, quite a few years later , I noticed that there was a recommendation to prescribe it by weight and I remember then calculating it and discovered Iwas taking too much.

I just checked the guidelines here in the U.S.
"The requirement to prescribe Plaquenil (hydroxychloroquine) by weight to reduce the risk of retinal toxicity, particularly using
actual body weight (ABW), became formally established with the 2016 American Academy of Ophthalmology (AAO) guidelines.
Prior to this, the 2011 AAO guidelines recommended a maximum dose of 6.5 mg/kg based on ideal body weight (IBW)."

So that confirms that when I was initially prescribed it there were no weight guidelines. In 2011 I had been on it for 11 years.

Unfortunately there is no easy answer to your question because each of us is so so different and the medication‘s react differently for each one of us!!! I have PMR and no medication works for me I have reactions to every single one and none of them helps me. You may want to try getting a second opinion from another rheumatologist if that’s possible for you. My very best wishes to you going forward!!!

I'm sorry you can't find anything to help you. Have you tried any of the natural anti inflammatory things?

Luckily I have a legal right to a second opinion and I'm seeing someone next week.

Thank you for replying to my comment. Right now the only thing I am taking only at night time is Tylenol eight hour arthritis medication. It seems to have the least amount of side effects. I will be honest it’s not great but it’s better than nothing right now. I am still taking One day at a time and hoping for the best going forward. again my very best wishes to you!!!

In my last post to you I forgot to mention what I do when I wake up in the morning with pretty bad joint pain. I try to do as much very gentle exercise as I can while I’m still in bed. It does loosen up some of the joints slowly but surely any exercise is better than none when it comes to joint pain it’s important to mention not to overdo any exercise!!! Again good luck to you going forward!!!

I call it bed pilates 🙂

I loved my pain relief with Methotrexate until my liver count changed. I was taken off of it. Now I take Maloxicam. I am not too impressed with it for inflammation. I wish you the best of luck.