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Thread: hello new to this forum has SLE

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    Default hello new to this forum has SLE

    Hello my name is Reuben schultz I am a 21 year old black male that has SLE and RA together. I was diagnosed with lupus when I was 18 it has been a rough road for me. my symptoms were unusual I started out with stomach problems and back pain. my joints did not come into effect until later. I was in the hospital for a week and I had every doctor in the department check me out.finally the eye doctor found out it was lupus through my eyes because my eyes were red. I am on medication you guys have probably all heard of. plaquinil, predisone, methotrexate. In febraury I went to alabama to a lifestyle center to see what i could do get of these drugs. it was very help full and I learned alot. but I am still on my medication. I tried going of my meds when I was done there. but when I did I started flaring up again and not feeling well. since I have been back I have been trying really hard to to change my diet and the things that I eat. it is not easy for me because i like eat all kinds of food. for me that means cutting out all nightshade and gluten free and wheat free stuff. well I dont want to bore you all so I guess ill talk to you all later.
    thanks for letting me join
    Reuben

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Reuben;
    Welcome to our WHL family! I am glad that you found us and that you decided to join. Yes, we are all familiar with the medications that you are taking. Did you doctors explain to you the reasons why you were prescribed these meds? If not, please let me know and I will explain them to you and what their affect is on your Lupus symptoms.
    You mentioned that when you tried to go off of your meds, your symptoms re-appeared. Lupus is not a disease that can be controlled without medication. Unfortunately, Lupus is a progressive disease and without medication, it can progress to the point of organ failure and even fatality. It is not recommended that you attempt to control this disease without medication. Also, it can be extremely dangerous to stop taking Prednisone abruptly. You MUST wean off of this drug (lower the dosage in stages) and this has to be done under a doctor's supervision.
    You will find, all over the internet, testimonials from people claiming that they cured their Lupus holistically, with diet, or with herbs, juices, or tonics. Please know that none of these claims has every been proven effective by the FDA, nor have they every been through any reputable clinical trial with published medical reports. Now, it is entirely your choice how you want to manage your disease, I am not telling you what you should or should not do. But do be extremely careful if you choose not to take your medication.
    Many Lupus patients have found that, when tapering off of the Prednisone, their symptoms re-appear. This happens quite often and the patients then have to increase their dosage of Prednisone in order to get the symptoms under control. Others find that they must stay on a maintenance dosage of Prednisone for longer periods of time. Methotrexate can often help to keep the Prednisone dosage smaller while alleviating symptoms. You will discover that you may have to experiment with dosages and medications until you find a treatment regimen that works for you.
    We are here to help you as much as we can and you will find that there is always someone here when you are in need. We also have a "Men's Forum" here if you'd like to talk to the other male members and share experiences with them!

    Again......welcome

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Reuben (05-07-2010)

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    Welcome to WHL, Reuben!

    I don't want to hijack your thread, but when I was recently in the hospital, Saysusie, the doctors asked me what I was taking for SLE and when I told them Plaquenil they acted like I wasn't taking anything for SLE at all. Isn't Plaquenil taken for SLE symptoms also? Honestly, I didn't think it was just for Sjogren's, but I'm really starting to question myself.

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    Reuben (05-07-2010)

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    Hi BonusMom;
    First, I am so glad to hear from you, I was asking about you and how you were doing!!

    With reference to Plaquenil and Lupus:
    Yes, Plaquenil is one of the standard treatments for Lupus. However, if it is the only treatment that you are taking, then doctors assume that your Lupus is not serious. Why? probably because if you were having any organ involvement, you would be taking DMARD's, NSAIDs, Corticosteroids, and other more potent medications. If you are not taking any of these, then the doctors assume that your Lupus is not severe, that your organs are not involved, and that you have limited symptoms.

    Plaquenil helps with the fatigue (for some) and with skin manifestations of the disease, and, to some extent, inflammation. If symptoms of Lupus are more serious than these, then other drugs (as I've mentioned above) will be added to your regimen.

    Have I answered your question? Please let me know if you need anything more? I am glad that you are home from the hospital. How are you?

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Reuben (05-07-2010)

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