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  • To medicate or not?

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    Old 05-29-2015, 04:38 PM   #1
    Lambers
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    To medicate or not?

    My Rhuematologist thinks I have RA or lupus, but that I don't quite meet full diagnostic criteria yet. Do I wait to for worse symptoms or start Plaqenil?

    I believe she is thinking of starting meds based on my description of past symptoms, mild symptoms still here, and labs. (positive ANA homogeneous pattern with low C3 and low normal C4.)

    I've had joint pain flare and go, but then started in November and still not gone. I was very sick Jan-March (pain kept me up at night, fatigue, hair loss). I had painless blisters constantly in my mouth and 2 days I did have a butterfly rash but I don't think that counts. Anyway I finally feel much better (brief pain in AM only), mild fatigue and elevated temp but not 100.

    Side effects for Plaquenil seem unpleasant and I'm finally feeling better! But then again if I get sicker again it could take a long time to work. My dr seems on the fence and will talk with me on Monday. Any advice, thoughts welcome.

     
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    Old 05-29-2015, 06:53 PM   #2
    VeeJ
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    Re: To medicate or not?

    Hi, Lambers. On the main panel, above the user threads, there's a section of "sticky posts", one of which contains the ACR criteria. A malar rash actually could fulfill one of the criteria.

    Which Plaquenil side effects are you worried about? It's considered a mild and safe drug. (Older antimalarials weren't nearly as safe. And the stronger 2nd and 3rd tier lupus meds have far more serious potential side effects.) I adapted easily. I had some "halo effect" around bright lights at night for several weeks, also some nausea (but the nausea was no big deal after 20+ years of GI misery). Both resolved quickly. I see my eye doctor twice yearly for a field vision test. Despite melanin build-up being *extremely* rare, my rheum wants me to do the field vision test, so I just do it.

    Plaquenil has helped me greatly, with no downside. I jumped at the chance to try it, but I'd had up's & down's since 13, and was flaring nastily when finally diagnosed. But if you're between flares and haven't had too many of them, maybe it's a little harder to take the leap...?

    Final thoughts: Plaquenil has been shown to reduce the odds of severe flares, helpig to ward off permanent damage. Today it is prescribed to all eligible lupus patients, even those who additionally require the stronger meds (steroids &/or immunosuppressants). Many people take it, and it's been around for years. Let us know what happens, OK? Good luck!

     
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    Old 05-29-2015, 07:37 PM   #3
    Lambers
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    Re: To medicate or not?

    Thank you for responding. I suppose I was expecting RA but not lupus as a possible diagnosis, though either way the treatment would be the same. The potential for permanent eye damage with plaquenil is what scares me. I have had lenses implanted in my eyes, and that affects flow of fluids. But after reading your response it occurs to me that the smart thing would be to call my ophthalmologist and ask if the surgery affects my level of risk, and what sort of monitoring would be recommended. Thanks for sharing your wisdom

     
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    Old 05-30-2015, 04:14 AM   #4
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    Re: To medicate or not?

    Lambers, there are two extremely popular lupus books, both written by the top rheumatologists in the U.S. One rheum/author devotes an entire section to persistent misconceptions about Plaquenil. It makes him very angry, he says, that so many patients who might benefit from the drug are scared off it needlessly. He does on to discuss odds (extremely low), correct dosages based on weight, which subset of patients might not be eligible, etc. You could borrow this book from your library, fax the appropriate pages to your ophthalmologist, ask for his opinion, and ask him specifically whether lens implants create any special considerations.

    You could take the book along when you see your rheumatologist, too, thereby getting two independent opinions! Good luck! Let us know how it goes with both doctors & how you're doing.

    P.S. I'm not poo-pooing your concern, not one bit. Because I owned an earlier edition of this book before I was diagnosed and had read the pertinent section, I'd already calmed myself down before being handed the Plaquenil Rx. Had I not read this material in advance, I'd have probably refused the med! Inquiring specifically about lens implants makes total sense to me---after all, it's ones VISION that's in question.

     
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    Old 05-30-2015, 04:33 AM   #5
    Lambers
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    Re: To medicate or not?

    VeeJ, thank you for the tip! Can you tell me the author or title of the book? I would like to read more and have something that could help me talk to the Drs.

     
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    Old 05-30-2015, 05:40 AM   #6
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    Re: To medicate or not?

    Lambert, please see the "sticky posts", where such info appears just once. Have a great weekend.

     
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