Please direct this question to Dr V~ Thx! 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
My hair loss started as the size of a dime. Over the past two years it has increased to the size of a half dollar and several more spots with hair loss. The way I notice new areas of loss is by a tingling pin prickling feeling. My dermo had never heard of anyone feeling anything with hair loss. Does this mean anything? Is it nerve related? I have been getting scalp injections to promote hair growth which has been gradually working by the area continues to spread. Any ideas on how to stop hair loss?View Thread
I am currently under going tests for bronciectasis. I have had a cough for 6+ months now and have coughed up clumps of blood 5 different times. I have taken sputum tests, was given a TB test which came out negative. I have been off plaquenil one year in Feb. Has anyone had these issues.View Thread
Thank you Lupylisa for your reply. I was told the retina damage was irreversible even when discontinuing plaquenil....you think differently. So scarey...I am going to try to stay off plaquenil. About a year and half I started to loose a patch of hair. The patch of hair is slowly growing back but two more are showing up.. Do you know anything about reversing that? I was still on plaquenil when the original patch loss started.
Thank you very much for the links to continue my research. As hard as it was to read, it has confirmed my decision to stay off the medication if at all possible. It can be so confusing when some doctors tell you one thing and others make light of the situation...frustrating!View Thread
Last February I discontinued taking plaquenil after 22 years of being on 400mg a day (200mg 2x day). When I had my annual eye exam the dr told me I had reached the max plaquenil toxicity level which could cause retina cell to die. The good news is that the eye exam did not have any evidence of this problem. I was considering going back on plaquenil and now I am scared to death.....Does anyone have any info on this topic????View Thread
I am experiencing patches of hair loss which have been diagnosised by my Kaiser Dermo as Alopecia. He does not think it's Lupus related but I am not sure I am convinced of that. I am on a mission to discover why this is happening and how I can prevent it. I have had two shots of cortesone to help promote hair growth but am not happy about using medication. I have new hairs growing but now my hair dresser has discovered two more smaller areas...An aurvedic friend suggested organic shampoo and conditioner and some aurvedic oil for the scalp.
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