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Retinal Toxicity for Plaquenil

Posted , 6 users are following.

Ccfbarb
Ccfbarb

Hi Everyone, I just had a message from my eye doctor, that he and a retinal specialist believes I have the start of retinal damage in my eyes, from the Plaquenil.  I'm 64 years old, female with a positive diagnosis of CNS Involvement of Sjogrens.  I've been on 400 mg Plaquenil daily for about 10 years.  I'm so freaked out, because he just sent this message, and told me to stop, but now what do I expect?  Has anyone had this from plaquenil?  He said it takes a little while to clear your body.  My vision is fine, and he found these results on a special retinal scan last week.  Should I expect to lose some or more eyesight, if I stop taking the medicine today? My husband just kind of said, "that's too bad", and he just doesn't get it!  Anyone with information would be greatly appreciated!

1 like, 5 replies

5 Replies

  • kj0223
    kj0223 Ccfbarb

    Posted

    In February 2015 I went to the eye doctor for my six month appointment and he told me to immediately go off the plaquenil. A year and a half before I had  A test that said I was minor toxicity. I was having some white shadings in my vision. That went away immediately . Since then the only thing I am taking in replacement of that is I bruprofrin 800. He wants me to go on methotrexate or CellCept are ever in to help stop the progression of my lupus and Sjogren's syndrome but I am not going to take any of that. I take Salagen for the dryness and  have been having a lot of long the problems and wheezing going on. However my whole family is riddled with lung cancer so that is scary but I've decided today. Today I am stopping salagen to see if any of the wheezing goes away. It did take several months before I really felt The repercussions of not being on plaquenil anymore of  pain and inflammation but like I said I do take ibuprofen. I am actually going to my rheumatologist today at 1 o'clock. So I took plaque when L for 20 years and it gave me a white shadings and my vision and I've taken the salad and I've taken selling for years and years and now I find out it's probably because of my wheezing and shortness of breath all the lupus and Sjogren's can do all that. Well good luck

  • katalin59838
    katalin59838 Ccfbarb

    Posted

    Please let me know if Plaquenil help your last 10 years? 

    I am thinking about to start taking it!

    I like to know if is helped with your fatigue? I am always tired !

    Thanks

  • Ccfbarb
    Ccfbarb

    Posted

    Yes, Plaquenil helped a great deal . Normal saliva , no aches and pain/ fatigue . Now that stuff is back.
    • katalin59838
      katalin59838 Ccfbarb

      Posted

      Thank you 😊,

      And you able to take it for 20 years before is affected your eyes?

    • Ccfbarb
      Ccfbarb katalin59838

      Posted

      Yes, but I wouldn't take it again for as long. I would be very careful to only use if life is too very difficult. I thought it was one of those million side effects everyone warns you of and never happens. I would never want to lose my eyesight over Plaquenil! It takes months to a year to totally leave your system. Wonder what damage it is doing even now?

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