Thank you Lisa for bringing up this topic. I have been on plaq 400mg for approx. 25 years now. I have tried going off and have tried reducing to 300mg. I went off because I was feeling well and felt I didn't need it (sound familiar?). I love the notion of being drug free. The second time, although I was developing alopecia, I felt pretty good when my ophthalmologists scared me with the fact of toxicity and same story you received, so I went off. Then my alopecia progressed and my rhuemi, dermo and another doctor, whom also had Lupus, confronted me and convienced me to go back on plaq. What a decision~lost of seeing color with my eyes or losing my hair!
I would really appreciate any feedback on this topic View Thread
Dr Zelman, 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
A few months ago, my upper gums on both sides became hot, inflamed and started to puss. I was brushing my teeth with a sonicare toothbrush after every meal, flossing and gargling with Listerine to try to fight bacteria infection. Tried salt water, soft bristle brush, everything I could think of. My dentist encouraged me to come in every 3-4 months for a professional cleaning to try to help combact the problem but also asked me to consult with my Rhuem dr. My dentist strongly thought my gum inflamation was due to my Lupus. I had been off my plaquenil for approx 16 months. At the same time I had been seeing a dermo and getting shots of cortesone in my scalp to help promote hair growth in my expanding alopecia spots. My Rhuem dr urged me to start back on 300mg daily dose of Plaquenil to reduce overall inflamation. I'm happy to report after 6wks my gum and scalp inflamtion had reduced~not gone but much better. Now I'm fighting the psycological issue of not wanting to be on drugs because I have reached level of toxicity being on Plaquenil. Yes~~~it's scarey of the thought of losing teeth and hair~argh!!!!View Thread
I have alopecia on the top of my scalp in multiple areas. My dermo has been giving me shots of cotisone to promote hair growth. At my last visit he told me he wanted me to start back on plaquenil because the shots are not effective. I have been off plaquenil for 2 years now and the alopecia started 2 years before I stopped taking plaquenil. I also have reached the "toxicity" level of plaquenil so I am extremly skeptical about starting a drug when I'm not sure it's the problem solver especially since I would put myself at risk for killing my retina cells. Does anyone have any reccomendations for alopecia? Has anyone tried acupunture or any other types of holistic alternatives? Thx and hugs to all~ dlrobardsView Thread
My daughter's getting married 12/29 and I am trying to stay organized so I don't feel the wedding overload on top of the holidays. I've cut back my work hours and hope to have my gift shopping done by first part of December. Does anyone else have any other suggestions besides rest, rest, and rest?View Thread
I was diagnoised with Lupus 22 years ago. The first advice my doctor gave me was "Don't go to the library and read every single piece of info about Lupus." Being that I love to research,at first I didn't understand his comment but now, years later, I know why. There are so many types of variations of the disorder that you may not, at this point, know how Lupus affects your body as a whole and....it is extremly overwhelming. The other fact I have experienced is that the issues aren't always consistent....AND stress can (key word~can, but not necesarily)add to the complications. I would be true to yourself and fuel your body with healthy foods, exercise, get plenty of rest and learn to say "no" to minimize overload. I am a "go-go" type of person so this has been very difficult for me to accept and learn. I have found if I "practice what I preach" I am a much more healthier person. I have been off my plaquenil for a year now and managing my flare ups on my own. You have come to a wonderful community of Lupies~ WELCOME!View Thread
Hi Pamboyd31, 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