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Thread: hi, new here, i have a bunch of questions

  1. #1
    Join Date
    Apr 2014
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    Default hi, new here, i have a bunch of questions

    this seems like a really helpful forum, been reading some of the older posts....

    some questions,
    how does plaquenil work? the nitty gritty of it,.

    lupus connection to:

    what supplements are people taking?

    i have terrible fatigue issues, weight/muscle loss, and hair loss

    i take 200mg once a day, i started on 200mg/2x/day, but it gave me side effects so i lowered it to one a day, been on it since 2011, so starting my third year, my doctors never told me to get an eye exam, i read about it and requested referral, long story short, still no eye exam, i had one but they did the wrong one,...
    is that bad? what would i notice as far as eye changes?

    i take vit d3 ~8000iu/day, magnesium, vit k2, chlorella recently, alpha lipoic acid also recently, i try to eat no sugar, execept for some bread, crackers, the occasional pasta, everyday i drink my veggys in a green shake, eat minimal fruit, im off grains almost completely, lots of eggs, butter, red meat, coconut oil

    and despite all that ive gone diabetic, im a skinny diabetic, so its not a matter of food and loosing weight,

    drs doing no bloodwork, just, "you have diabetes, heres a prescription"

    so, being that i have sle, (not discoid) dont you think they should be checking my immune assays for thyroid, kidney function, insulin, etc....inflammation markers

    any recommendations for labs i should push for,

    thyroiditis for the past year, thats when my sugar shot up, for some reason the endos and primaries dont see a correlation,...idiots

    any help would be greatly appreciated...

  2. #2
    Join Date
    Nov 2001
    Victorville, California
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    Hello and Welcome to our family!!
    First, let me say that you should either requests new doctors who are literate and informed about LUPUS (and auto-immune disorders) and who know what symptoms to look for and what treatments to prescribe.
    If this is not possible, then you are doing the right thing! Finding information yourself in order to educate yourself about your disease. Yes, demand that your doctors run tests to ensure that your Lupus is not affecting other parts of your body, that your long-term use of Plaquenil has not caused any damage, and to determine if your disease is active.
    Here is information about Plaquenil that I hope will be helpful to you - This is from the Lupus Foundation Of America:
    Hydroxychloroquine is a one of a number of drugs which have been used for many years in the treatment of malaria. Fortunately, it was discovered these drugs often are helpful in the treatment of various rheumatic diseases, particularly systemic lupus erythematosus (SLE or "Lupus") and rheumatoid arthritis. Although chloroquine is sometimes used, the preferred antimalarial drug is hydroxychloroquine due to its greater safety. These drugs are not painkillers.What Does Plaquenil Do?It is not possible at the present time to explain precisely why hydroxychloroquine is effective in various rheumatic diseases. When effective, it can decrease damage to the tissues of the joints, skin and other organs in the body.How is Plaquenil Given?Hydroxychloroquine is a tablet that is best taken with food as it has a slightly bitter taste. Generally it is taken once a day, but occasionally it will be prescribed to be taken on alternate days. Treatment generally starts with two tablets per day and subsequently may be reduced to one a day (or every other day).Will My Arthritis Get Better?The majority of patients will find hydroxychloroquine to be effective, but like other anti-rheumatic drugs, it may take between 8 to 12 weeks for the disease to respond. Often you will be given other medications when you start hydroxychloroquine so that you will improve more quickly.Are There Any Side Effects?Hydroxychloroquine is one of the better tolerated anti-rheumatic drugs. However, as with all medications, there is a potential for side effects to occur. Mostly, these are not serious, so the patient may not need to stop the treatment if side effects occur. However, if any serious problems occur, treatment should stop. If the patient develops any of the problems mentioned, the patient should inform the doctor or rheumatology clinic.The most common side effects are mild nausea and occasional stomach cramps with diarrhea of a mild degree occurring sometimes. As mentioned previously, the tablets are slightly bitter and are best taken with meals to avoid stomach upsets.Skin rashes occasionally develop and hydroxychloroquine may make you more sensitive to the sun, so it is advisable to use the usual precautions of sunscreens and a hat if you are in the sun. Also, your hair may become a little bleached with the drug and rarely a degree of thinning of the hair can develop.Some patients develop headache or dizziness and may become a little weak whilst on hydroxychloroquine and if this occurs, the treatment should be stopped.Anti-malarial drugs can sometimes cause problems with the eyes. The side-effects range from temporary blurring of the vision and a slightly increased appreciation of glare (so wear sunglasses in the sun) which are not uncommon to more serious but rare changes in the back of the eye.Eye problems were much more common in the past when chloroquine was the most commonly used anti-malarial drug and dosages of these drugs were considerably higher. Because of these problems, before you start Plaquenil you should schedule an appointment with an Opthalmologist to assess the eyes and to make sure that there are no eye problems present that could make side effects more likely. Your Opthalmologist should schedule regular eye exams every 6 months to test for possible eye problems associated with hydroxychloroquine.Finally, hydroxychloroquine should be avoided in pregnancy, so please discuss this with your rheumatologist if you wish to become pregnant.Do Any Other Medications Interfere with Plaquenil?Generally there are no drugs that make a side effect more likely with Plaquenil. Indigestion remedies should not be taken at the same time as hydroxychloroquine. Try to allow 4 hours to pass between taking one and the other.Next, please refer to the sticky located on the top of "Newly Diagnosed" entitled "Criteria for Diagnosing Lupus" here on WHL. This sticky lists most of the tests that are used to diagnose and monitor Lupus. I would also suggest that you read through the sticky sections on the top of each page as they are filled with great information.
    If you still have questions, please do not hesitate to ask us and we will do all that we can to provide you with an answer, information, or guide you to a site that might answer your question for you. I wish you the very best.

    Peace and Blessings
    Last edited by Saysusie; 05-04-2014 at 08:59 AM.
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