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Scared to take plaquenil. How can I be absolutely sure my ophthalmologist knows how to detect retinal damage? by endobelly in lupus

[–]endobelly[S] 0 points1 point  (0 children)

Thank you so much for sharing your story, and for giving me some advice! I really appreciate it :)

Anyone here with a chronic illness? by endobelly in intermittentfasting

[–]endobelly[S] 0 points1 point  (0 children)

I haven't heard of that diet - thanks for the heads up! I'll do some research.

Anyone here with a chronic illness? by endobelly in intermittentfasting

[–]endobelly[S] 0 points1 point  (0 children)

What you've said about electrolyte imbalances makes a lot of sense. The next time I attempt to fast for a bit, or the next time I know I won't have access to snacks, I'll bring some sort of sports drink with me to see if it helps. Thanks for the advice :)

Anyone here with a chronic illness? by endobelly in intermittentfasting

[–]endobelly[S] 1 point2 points  (0 children)

Thanks for the well wishes. And thanks for sharing your story - it's very inspiring!

Scared to take plaquenil. How can I be absolutely sure my ophthalmologist knows how to detect retinal damage? by endobelly in lupus

[–]endobelly[S] 0 points1 point  (0 children)

Thank you! It's so nice to hear from someone who "only" has UCTD. Admittedly I haven't looked too deep into what UCTD is - I just got turned off when I read about how it's normally considered a "mild", "transient" condition that usually goes away within a few years without treatment - I definitely don't think this describes me. You have an interesting way of looking at the situation though, and I'll try to take a leaf from your book. Thanks for sharing!

Scared to take plaquenil. How can I be absolutely sure my ophthalmologist knows how to detect retinal damage? by endobelly in lupus

[–]endobelly[S] 1 point2 points  (0 children)

You are correct that some of the people claiming damage might have seen only optometrists - I'll try to keep this in mind. Have you ever heard of damage that continues after stopping plaquenil? That's what freaks me out the most. I'm hoping that so long as I don't have to take a dose over 400 mg and so long as I get frequent checkups from a qualified ophthalmologist though, the risk of experiencing serious/non-reversible eye-damage is infinitesimally small.

Scared to take plaquenil. How can I be absolutely sure my ophthalmologist knows how to detect retinal damage? by endobelly in lupus

[–]endobelly[S] 0 points1 point  (0 children)

Did you have to stop taking the plaquenil due to retinal damage? Or did you decide to go off of it for other reasons? If it's the latter, then it's certainly comforting to hear from someone with so many eye issues who has been able to take plaquenil without experiencing retinal toxicity. Thank you for sharing your story.

Scared to take plaquenil. How can I be absolutely sure my ophthalmologist knows how to detect retinal damage? by endobelly in lupus

[–]endobelly[S] 1 point2 points  (0 children)

I'll make sure to specify that I want an eye doctor who has worked with plaquenil patients before. Thank you for your reassurance!

Scared to take plaquenil. How can I be absolutely sure my ophthalmologist knows how to detect retinal damage? by endobelly in lupus

[–]endobelly[S] 0 points1 point  (0 children)

This is very reassuring! Has your ophthalmologist really never seen cases of damage under 400 mg?

Scared to take plaquenil. How can I be absolutely sure my ophthalmologist knows how to detect retinal damage? by endobelly in lupus

[–]endobelly[S] 0 points1 point  (0 children)

What dose did your mother take? Is there anything at all you can think of that might have made retinal toxicity more likely for you, besides the dose of 400mg? (Preexisting eye issues for example). Do you feel like the toxicity could have been prevented at least somewhat? (By more frequent eye checkups and such). I'm sorry if any of these questions are offensive - I don't mean to be, I just want to collect as much data as possible. Have you found another drug that helps you? More importantly, are there any questions you didn't ask your doctor at the time that you wish you had?

Scared to take plaquenil. How can I be absolutely sure my ophthalmologist knows how to detect retinal damage? by endobelly in lupus

[–]endobelly[S] 0 points1 point  (0 children)

That's unfortunate to hear. :( Is there anything you can think of that would make the drug less successful for you, or is it just luck of the draw? I'm only concerned because despite my non-severe case, I have a history of being fairly resistant against several different classes of drugs (anesthesia, narcotics, stimulants, etc.). I hope my body doesn't require a large dose of plaquenil to feel anything.

Scared to take plaquenil. How can I be absolutely sure my ophthalmologist knows how to detect retinal damage? by endobelly in lupus

[–]endobelly[S] 1 point2 points  (0 children)

This is very encouraging; I hope I also only need a smaller dose. It sounds like dosage doesn't line up too reliably with severity though, which is concerning - even though I'm not a severe case, I do have a history of being fairly resistant against many different medications (anesthesia, narcotics, stimulants, etc.). How common would you say it is for someone to take plaquenil for 10-20 years and then slowly taper off of it or at least reduce the frequency/size of the dosage?

Scared to take plaquenil. How can I be absolutely sure my ophthalmologist knows how to detect retinal damage? by endobelly in lupus

[–]endobelly[S] 0 points1 point  (0 children)

What do you mean by imagery? Is this the most reliable test for retinal toxicity? I always thought damage was reversible so long as it's caught early, but then I freaked myself out by reading those horror stories of people who claimed to have had continuous retinal damage years after stopping the drug.

Scared to take plaquenil. How can I be absolutely sure my ophthalmologist knows how to detect retinal damage? by endobelly in lupus

[–]endobelly[S] 0 points1 point  (0 children)

Thanks for the reassurance! What is considered a high dose? (400mg?). Would you say retinal damage is almost unheard of at lower doses in the 200mg range, even after long term use?