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My name is Tiffaney, I am 37 years of age, (three children 21,18 & 5) I have decided to take myself off the Plaquenil. I have been on it several months now and I am still in pain. I get no support from my family and when I am in pain no one believes me. It truly sad and no one knows how alone I feel dealing with Lupus. Has anyone taken their self off Plaquenil?  

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12 Replies

  • Posted

    Hi there, 

    Sorry to hear this.

    Hydroxychloroquine takes 3 months to start working. Don't stop unless advised by the doctor or if you are having severe side effects from the medication.

    It took over a year to find the correct medication to get the Lupus under control for me.

    Please talk to your consultant as you may need a cocktail of drugs to help ease the pain.

    Hope this helps.

    Good luck and you'll find plenty of help and support on this site.


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    • Posted

      Thank You. I have actually been on it for about 9 months now and I have lost practically all my hair! This is so life changing and the extra weight I have gained with being on prednisone. I am trying to stay strong but its like I don't know who I am anymore.

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  • Posted

    Hey, it takes around 3 months to get any benefit from it, are you taking any anti-inflammatory meds (like naproxen) to help with the pain too?

    Also, I went to a lupus lecture the other week, hydroxychloroquine (plaquenil) is also meant to help stop or slow down the disease’s progression so it’s worth baring that in mind before coming off, might not be helping so much with pain but might be giving other benefits you may not realise yet? Also, what dose are you taking? 

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  • Posted

    Hi tiffy, you are no alone and I'm glad you found this sight because you can actually talk about your condition with people on this sight who can relate to what's going on. People dont know how lupus affect us and I know how you feel. Plaqunil helps and I have been taking it since 08. When i dont have funds for refills I can feel the difference. Hope you feel better soon.

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  • Posted

    I’m 27 and have had lupus for 19 years. Iv had flares where they have put me on high dose prednisone to shut down disease activity. Plaquenil is something il have to take lifelong as maintenance dose and it helps... probably one of the lesser toxic drugs with fewer side effects. I went off of it for 3 weeks as I was lazy to refill my prescription and that set off another flare. Currently also taking mycophenolate MMF (cellcept) and that has helped control the disease. I would suggest you follow your rheumatologists instructions and continue with your medications as I personally wouldn’t risk it again. I wish you all the best, and not everyone will understand what it’s like to live with Lupus. My pains and fatigue are mistaken for laziness or excuses but no one knows what’s its like battling this disease every day. 
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