Hydroxychloroquine side effects

@ruralgal76 its not easy with non alcoholic fatty liver as everything goes through the liver especially drugs. family doc says my liver is back to normal, but I dont want to push my luck. rheumy wants me to take meloxicam twice a day, ( anti inflammatory ) I need something that for sure the pain is crazy.

@mef51

@catlove30 oh my goodness! Is the problem with your eye the result of dry eye; which is the result of hydroxychlorequine? I have had problems with dry eyes as a result of medication for quite some time; but the dry eye problem has not affected my vision, that I know of!!?? We just never know what side effects we may encounter as a result of medications, do we?

@cptrayes Yes, I’m in the US. Here you have the eye exam the first year you start it, year 5, and then annually after that (or at least that’s what they do at Mayo, where I’m seen). Though I feel like that changed between when I started my meds and when I clarified this fall..? I seem to remember during the medication education appointment that it was every 3yrs, but that was in 2022. Could be they updated the standard recently or I was just getting incomplete info that was nonspecific to my case/circumstances.
I suppose my age could also factor in - I was quite young at the time of diagnosis (34), so it could be the age of my eyes, liver, kidneys, etc and ability to metabolize meds may impact the initial frequency of the eye tests.
It’s always interesting to hear how standards of care differ from one country to another!

@naturalcranberry
My experience with plaquenil is an initial visual field eye exam and then every 6 months thereafter. My Daughter is taking it now for RA which is why I took it. She is also on the every 6 months schedule. We are in the US. Interesting that the schedule for you at Mayo is so different. Both my daughter and I were in mid 50s when we started it.
I did a little research and found this from the American Academy of Ophthalmology . It looks like the protocol is no longer what it used to be and what Mayo is doing is the currant protocol.
https://www.aao.org/education/clinical-statement/revised-recommendations-on-screening-chloroquine-h
I have retinal toxicity from it. I was overdosed from the beginning. in 2000 at 200 mg twice a day. In 2000 there was no protocol to give it according to weight. That came later. I remained on it for 12 years at that overdose. I am a small, thin person. My weight has been stable at approximately 52 Kg.
Perhaps they are doing eye exams on my daughter every 6 months because of my having retinal toxicity. My eyes have not gotten worse since being off of Plaquenil. I stopped it in 2012.

This is the currant protocol for dosing Plaquenil

"Dosage: The recommended daily dosage remains unchanged at ≤5.0 mg/day/kg real weight. Keep under 400 mg/day for severly obese patients."

@naturalcranberry I wouldn't be happy with that schedule of eye exams. If my memory serves me right, 1 in 13 people will have retinopathy at 5 years. If they are only being tested at 5 years, then some of those people could have been saved further eye damage at 2,3,4 years.

@missy245 Oh wow, that was a huge dose of plaquenil!!! I’m on 200mg every other day, 100mg every other day. When that wasn’t sufficient, we tagged in Humira.
And yes, I have to imagine that your retinopathy likely has something to do with the high dosing, as well as your daughter’s frequent exams - I’m glad they’re exercising caution with her, given the family history.
It’s interesting how often standards and protocols change, but I’m glad that they update those for just this reason!
And thanks for the link!

@tisme I didn't hear about it, I HAVE it! Thinning hair and hair loss every time I shower. Fortunately I'm not a woman who would freak out. Also, baseball caps and other hats help me if I'm feeling exposed. To be clear, I also have Hashimotos and thyroid issues or age can cause thinning hair. I'll call it autoimmune hair loss!

@tisme be careful with Meloxicam. It’s a NSAID and can damage kindeys. Up to 3000 mg Tylenol may work for you.
There always a trade off unfortunately

@catlove30 Dry eyes as a result of SJogrens Syndrome are helped by plaquenil for some people.

This is because of inflammation and NOT because of medication.

In my case, I have had Sjogrens dry eye problems for 30 years.
I'm taking plaquenil and restasis eye drops for some benefit.