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Thread: Has anyone weaned off all medications?

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    Default Has anyone weaned off all medications?

    Hi everyone! I was wondering whether anyone has weaned off all their medications? I've been diagnosed with SLE about 4 years ago. I used to take CellCept, Lisinopril, prednisone, Plaquenil (generic brand - hydroxychloroquine- I'm still taking this one). My bloodwork and urine results were good according to my last doctor's appointment. Do we have to be on Plaquenil for the rest of our lives? I'm going to ask my rheumatologist when I see her next.
    Last edited by buddhabelly; 03-23-2010 at 05:20 PM.
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    I think the latest trend is to keep patients on Plaquenil long-term. I did go off Plaquenil for a short time, last summer for about a month. But then I started feeling bad agaiin, pain, fatigue especially, so the rheumy put me back on it. I dont't mind all that much, though, because I know it helps.

    Whenever I'm in a major flare, I go on Prednisone, 30mg to start, then taper off slowly. I haven't needed it since the late fall/early winter and I'm hoping I can stay off it until the fall...we'll see.

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    Diagnosed with SLE, Sjogren's, Reynaud's, Celiac, and arthritis November 2006.

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    Hi, I have found that most of the meds I take are the ones I have to stay on.
    Synthroid
    mirapex
    hctz
    premarin
    calcitrol
    dang I started this list and just about e erything is on it!!!!
    Well, I think I agree also about the plaqinel (I take the generic also)
    I think the benefit of that one out weigh the thoughts of being off it.

    So good luck with your meds,
    nonna

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    thanks for all your replies. I guess plaquenil will be a part of my life. I'll try anything to stay feeling good...
    "I've learned that when bad times come, you can let them make you bitter or use them to make you better."

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    I stopped my Methotrexate last October. I stopped due to vomitting blood, which until we figured out the reason I didn't want to take the Meth because of the nausea it caused. I was off of it for a couple of weeks and realized that I felt better than I had in quite a while. So, I stayed off of it. I have had a few "small" issues since going off, but nothing major. I feel better than I have in the past year. Mind you summer hasn't hit yet, so we'll see what happens. I also am trusting in God that I'm feeling so much better. (Not wanting to start a debate.) I'm not saying that it's okay to go off your meds, but just wanted to respond since I had. Best of luck to you!
    Lauren

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    i don't know if we will have to stay on plaquenil for the rest of our lives, but until something better comes along, i think probably so. My dr. says yes, it is long-term. I tried to reduce my dosage last year after starting methotrexate, but i started feeling worse, so i went back up to 400 mg per day. i am trying to keep my hopes up that some of these new "promising" medications will give us our lives back.
    Phyllis

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    I never stopped taking meds since my diagnosis. My doc says I should take Plaquenil for life. I tried to stop it, but in a few days the pain returned so I am still taking it and skipping 2-3 days from time to time, so my liver can relax(so I think).

    BUT, when I was in the hospital for a week I met 2 women, that haven't been taking any meds for 15 years. Both of them said "For the last 15 years I FORGOT I have lupus". But then one of them had a big flare after 15 years being healthy, the other lady didn't have a flare and she was still feeling great without medications, but tests discovered she has kidney damage, so she had to stay in the hospital for a while. I also met a girl, who wasn't taking any meds for the last 7 years and was feeling great, until a very big flare. So it is possible to be without any medications for a long time, I guess when lupus goes into real remission.

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    I suspect that those who have weened off the meds don't spend thier time on web forums talking about it - so you may not get the response you're hopeing for to this post but it's the demographic of us - we're here because we have active lupus -
    much love to all my lupie friends -

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    Well, I've weaned off of all medications for my Lupus (other than NSAIDs). However, I am on a plethora of medications for Fibromyalgia, Raynaud's, IBS, TMJ, and other issues!
    It took me the better part of 10 years to finally get off of Lupus meds...

    Peace and Blessings
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    Look For The Good and Praise It!

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    I was on medication for 5 years (steroids and azathioprine), and on plaqenil for1 year. I have been medication free for a year and a half now. It is difficult to weane off medication, more so psychologically because you are worried about how your body will cope without any meds. Doctors sometimes keep you on meds for the sake of it - i found that plaqenil wasn't really of any benefit at all, if anything just deteriorated my eye sight

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