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Thread: when plaquinel doesn't work

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    Default when plaquinel doesn't work

    So I've been on plaquinel since September and am not sure it is the right drug for me, primarily because of the loud ear-ringing, but also I don't see it as all that effective. so far I'd say mildly effective. What is the next possible go-to drugs that dr might recommend? I want to research them before my Jan 5th appointment - no NSAIDs - can't take the constipation.

    Major symptoms,(in order of sevarity) joint pain and swelling, open sores on scalp and in mouth, sjorgrens' dry eyes, throat, dry cough, lightheadness, dizzy bouts of severe fatigue

    What do you think he'll try next?
    much love to all my lupie friends -

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    Well, Karen
    The next step for me was Methotrexate. The doc didn't stop the Plaquenil, either. I'm taking both now.
    I'm sure that others will tell you other meds that their docs have prescribed.
    Marla

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    It can take up to 6 months to really see the beneficial effects of Plaquenil. As Marla mentioned, your doctor may prescribe a steroid (Prednisone) or immunosuppressant (Methotrexate) drug to be taken with the Plaquenil.


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    I don't understand why one would need more than one medication to see good results.

    I know of a pharmaceutical medication currently used by a handful of doctors in the CA region and is showing significant results. This new medication (non-synthetic) can be used with standard meds. Eventually, the drug dosage are greatly reduced allowing the other to become the dominant med.

    What I found to be of great interest are the ingredients. There are only three, and they effectively put a stop on fibromyalgia, arthritis, and MS as well.

    Unless Lupus sufferers get a hold of this med, they will continue to question the effectiveness or side effects of plaquinel, etc.,etc. This can be avoided, but it seems like there are no other options. I know there is but the Pharma will make it sound like there isn't.
    Last edited by tsk0866; 12-26-2009 at 01:43 PM.

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    I'm in CA and would love to know what pharmaceutical medication you're speaking of so I can speak with my rheumy about it.

    Have you personally taken the "medication" that you are referring to? What other medication(s) are you taking with thhis miracle drug? What AI diseases have you been diagnosed with?
    Last edited by BonusMom; 12-26-2009 at 01:45 PM.

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    Default hi

    HI i also started plaquenil in september and as yet i dont feel any different.Maybe hang on in there with it like me and hopefully a little longer taking it we may feel some difference.I hope so anyway.Let me know what you decide.

    Lots of love
    Amanda.xx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by tsk0866 View Post
    I don't understand why one would need more than one medication to see good results.

    I know of a pharmaceutical medication currently used by a handful of doctors in the CA region and is showing significant results. This new medication (non-synthetic) can be used with standard meds. Eventually, the drug dosage are greatly reduced allowing the other to become the dominant med.

    What I found to be of great interest are the ingredients. There are only three, and they effectively put a stop on fibromyalgia, arthritis, and MS as well.

    Unless Lupus sufferers get a hold of this med, they will continue to question the effectiveness or side effects of plaquinel, etc.,etc. This can be avoided, but it seems like there are no other options. I know there is but the Pharma will make it sound like there isn't.
    The product called "Mirac" has been discussed at length here at We Have Lupus. What you are calling a "Pharmaceutical Medication" is nothing of the sort. Mirac is a dietary supplement. There is absolutely NO clinical trial proof that this product has any beneficial effect on Lupus whatsoever.

    It's so called miracle ingredients are nothing more than Vitamin C, Quercetin Dihydrate (which I note that the seller of this product didn't even spell right in their own FAQ), and Bromelain.

    Quercetin is a flavonoid that does indeed have mild anti-inflammatory properties, and is found in all sorts of common produce from tomatoes to onions. The problem is, Quercetin Dihydrate, the dried form found in these Mirac Pills, is almost completely insoluble in water. This means that 96% of the Quercetin you are taking in these pills is being unused and excreted from the body, leaving only a meager 4% of Mirac's purported main active ingredient in you body, which is a therapeutically insignificant amount. Quercetin in vegetables however, is readily absorbed by the body because it is dissolved in the acids of the vegetable.

    Bromelain is an enzyme commonly found in Pineapples, and does have anti-inflammatory properties, but, like the Quercetin, is only found in therapeutically insignificant amounts in the product Mirac.

    The other touted "patented" ingredients in this supplement are simply the polymerized gel components that makes up the capsule itself. The same stuff every other pill capsule is made of.

    So, eat your vegetables, drink some pineapple juice, and take some Vitamin C, and you have your "miracle" cure. Of course it is worth mentioning that Mirac costs $75.00 per month, and the manufacturer recommends you take it for at least one year. You can do the math, veggies, pineapple, and Vitamin C are not going to cost a person $75 dollars a month. It's also worth noting that the medical board of The Lupus Fundation of America found absolutely no proof of any beneficial effects from this product, and very publically REFUSED to carry the manufacturers advertisements in any of their literature. This stuff is snake oil, and nothing more.

    Rob
    Last edited by rob; 12-26-2009 at 05:24 PM.

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    Quote Originally Posted by tsk0866 View Post
    I don't understand why one would need more than one medication to see good results.

    I know of a pharmaceutical medication currently used by a handful of doctors in the CA region and is showing significant results. This new medication (non-synthetic) can be used with standard meds. Eventually, the drug dosage are greatly reduced allowing the other to become the dominant med.

    What I found to be of great interest are the ingredients. There are only three, and they effectively put a stop on fibromyalgia, arthritis, and MS as well.

    Unless Lupus sufferers get a hold of this med, they will continue to question the effectiveness or side effects of plaquinel, etc.,etc. This can be avoided, but it seems like there are no other options. I know there is but the Pharma will make it sound like there isn't.
    I would encourage all WHL members to thoroughly research ANY person/company thoroughly prior to investing any monies in treatment not approved by the FDA.

    A dietary supplement is not a medication. For you to claim it is, OP, is misleading and false advertising.

    Persons with SLE and other autoimmune disorders are known to experience periodic/spontaneous remissions. AI diseases do not go away and cannot be "cured". Even the website of the product that the OP is promoting states "These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease."

    A website that compiles information/data on dubious alternative therapies or practitioners is www.quackwatch.com. It's a good starting point, though not all inclusive to all of the scams that are out there.

    Simply my opinion.
    Last edited by BonusMom; 12-26-2009 at 07:06 PM.

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    Quote Originally Posted by BonusMom View Post
    I would encourage all WHL members to thoroughly research ANY person/company thoroughly prior to investing any monies in treatment not approved by the FDA.

    A dietary supplement is not a medication. For you to claim it is, OP, is misleading and false advertising.

    Persons with SLE and other autoimmune disorders are known to experience periodic/spontaneous remissions. AI diseases do not go away and cannot be "cured". Even the website of the product that the OP is promoting states "These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease."

    A website that compiles information/data on dubious alternative therapies or practitioners is www.quackwatch.com. It's a good starting point, though not all inclusive to all of the scams that are out there.

    Simply my opinion.
    good info and research Rob and Bonusmom. I must also say as far as the plaquinel that I have been taking it for about a year and I have never noticed any difference, but that doesn't mean that it is not doing anything for me, who knows, I could be in a lot worse shape it I were not on it. I like Robs idea, eat your vegies and fruits and cut out the processed stuff.
    Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulations, that we may be able to comfort those who are in any trouble, with the comfort wich we ourselves are comforted by God. 2 Corinthians 1:3

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    I am actually feeling much better. Since the week after thanksgiving I haven't had any joint issues to speak of. So thanks all for the advise and feed back. I am still annoyed at the ear ringing but see my dr next Tu so will ask about that then.

    Too bad TSK0866 got his/her advertisment stuck in my thread. Very disrespectful to all of us.

    Patient beware....
    much love to all my lupie friends -

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