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I was told after so many years & xmg of Plaquenil, that I had reached the toxicity level which scared the blank out of me. I have passed the test for retina cell damage. Recently, due to inflamed gums and multiple spots of alopecia, I was strongly encouraged to go back on 300mg Plaquenil. Yes, my spots overall have decreased (not completely) in inflamation but I'm having a hard time wrapping my head around the toxicity issue...Any reccomendations? I am a Kaiser patient and they seem to be limited on their expertise.
Thank you soooo much for your guidance!
P/S How often do you reccomend eye exams for someone of my toxcitiy status?View Thread


Thanks so much for your help~
DLRView Thread

Thx and hugs to all~
dlrobardsView Thread


Your Daddy is a lucky man to be taken care of by such a dedicated wonder! I am sure he knows it!
Do you think your BP is a bit high because of your added care taking responsibilites? It makes sense, doesn't it?
Cheers to a bit of R&R for you!
dlrobardsView Thread


I had been on 400 mg plaquenil for 22 years and had annual eye exams before the doctor (new doc, specializing in eye disease) started talking to me about retinal toxicity. Fortunately for me, I had made a decision to discontinue plaquenil due to minimal flareups in the past few years. Currently I am having some joint aches which are tolerable but am concerned about alopecia patches of hair loss, which made me rethink about going back to medication. When I started taking plaquenil I was told that in rare cases the medication could affect my eyes where I could not see certain colors. All of the doctors that I talked to about this made light of the potential dangers. When I was told that I had reached the retinol toxicity level I was extremly alarmed. I have not heard anything about the relationship between retinol toxicity and stigmatisms. I will continue my research and watch your discussion. I hope you will do the same.View Thread

Hi Dr V,
I am at a crossroad of considering to go back on Plaquenil . A year ago I proposed to go off Plaquenil after being on it for 22 years. At my recent eye exam the doctor mentioned I had reached the plaquenil toxicity level and that my retina cells could die (which do not regenerate!)! My proposal was based on the fact that I had not had any major inflamation that completely shut me down or keep me from being active. If I had joint or muscle aches, I took care of it by resting, Aleve and ice. At this point I have not had any indication of organ problems. Two years ago I starting losing hair in spots. My dermo biopsied it and found nothing and no answer. Since then more spots have appeared and now with raised red patches. My new dermo classified some as alopecia and some as alopecia areata. He just shrugs and keeps giving me cortison ejections that has promoted hair growth but has not solved the problem. I am starting to have a few join aches and fatigue. I am wondering if I start back on plaquenil, will my alopecia deminish along with light fatigue and light aches? If I develope Plaquenil toxicity how will my body/eyes be affected? Is it worth the risk? I am a bit stressed about all this hair loss and trying to find a solution.
Side note: I am also a recent MOB (mother of bride) and am trying to stay focused on balance to prevent any flare ups.....
Thank you for your feedback as I do know every Lupus patient is different and you can only guide me.View Thread
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