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Thread: GP says I may need to add something to my medications...

  1. #11
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    When I start flaring bad I get put on steriods and cellcept. then I cut back on the steriods and stay on the cellcept.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

  2. #12
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    Hey guys, the doc has no intention of taking me off the plaquenil... I balance between 400mg and 600mg dose. I change my dose myself, based on how I feel. I am not sure how others do it, but that is what was recommended by my original rheumy and I have come up against no resistance to it from any doctor... so it must be a common thing to be in charge of your own dose on plaquenil?

    I use 600mg when it looks like I am in a flare and 400mg for maintenance. I tried to drop to 200mg and found that I would go into a flare within a week or two, I may as well have gone right off it. The plaquenil has been good to me, but the docs think I might just need a bit extra something... I expect it will be small dose of steroid. You've made me feel a bit better about the steroids though... thanks guys : ) I guess I will have to wait until July to find out what they recommend.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by giggle View Post
    Hey guys, the doc has no intention of taking me off the plaquenil... I balance between 400mg and 600mg dose. I change my dose myself, based on how I feel. I am not sure how others do it, but that is what was recommended by my original rheumy and I have come up against no resistance to it from any doctor... so it must be a common thing to be in charge of your own dose on plaquenil?
    In my experience, self regulating your plaquenil dose is something I've never heard of. I'm 6'1" and 200lbs, and my various Dr.'s and specialists all agree that 400mg per day is the maximum dose they would put me on, flare, or not, for someone my size and build. And plaq, being a long term medication, isn't likely to be something that you would take a little more of or a little less of depending upon how you feel.

    I'm not saying your Doc is wrong, I just have never heard of this before. Perhaps treatment standards and such in Australia are different than ours here in the US.

    I wonder if any of our other members have been self regulating their plaquenil dose.

    Anybody else ever try this?

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    Rob,

    What i've read it looks like different country's work with meds in different ways and i do know that here in the UK if your told a dosage to take that's what you do and letters are sent to your GP confirming it and they give you the correct amount for the month.

    I know i can't try it because of what i've just stated and when on other meds you need to be careful in what your doing.

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    i too am on 400 plaquenil.
    my rhuemy has said any more is rare.
    this is his maximum reccommended dosage

  7. #16
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    I've never heard of taking more than 400mg as well.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

  8. #17
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    I've never been on more than 400mg. My doc also said that is the max. Since I'm starting to have vision issues (after 12 years) and had to drop my dose to 200mg, I would be reluctant to go over 400mg. As Rob said, plaquinil is something that you take for the long haul. Prednisone and immunosuppressants are the drugs usually used for flares - at least in the US

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    Yeah I thought it was weird to be self regulating. But its what my old rheumy told me to do and not a doctor since has questioned it. But I have never been on anything but plaquenil and no one has ever suggested anything else... but then again I have taken care of myself all this time, I hadn't seen a health care professional in five or so years. Any GPs I saw didn't give a hoot. And the rheumy never once listened to anything I had to say. He was like a robot lol

    No one has ever mentioned a maximum dose rate, in fact many times I have been told this is the best medication to be on and I am better off on a higher dose of plaquenil than any other medication I could be on. Australian doctors arent known for their brilliance. : / Lets hope this new rheumy I have been referred to is decent!!

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    btw Im not a small girl, Im 5ft 9inches tall and while Im a size 10-12, Im built like an amazon. Im 76kgs. Im about the weight of your average sized guy and about the same height too.

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    From everything that I have read and learned 400 mg is the top dose used for Lupus. Higher doses are used for malaria and it is those doses that actually have a higher incidence of eye issues. I agree with everyone else that you might want to check into that
    Mari

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    ~Winston Churchill~







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