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Thread: newly diagnosed

  1. #1
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    Default newly diagnosed

    Hi all,

    I don't usually join these, but it was suggested as I live in a small community with no other Lupus supports systems in place. I was diagnosed with Lupus in June after years and years and years of weird illnesses. I didn't miss much work, but the joke was if anyone will get it, it will be Kim. My history includes many miscairages (sp), pnuemonia (many times), trouble breathing, joint pains, hypothyroidism, migraines, sun sensitivity, phlebitis of legs and lungs, face "acne", memory problems...boy what a thick file I must have! I am now being treated by a hemotologist who is really on the ball. I tested positive for the Lupus antigen. The diagnosis was actually found as they were looking for gentetic markers for phlebitis in my blood. It was an expensive test, but I am glad to have answers. Right now I am taking Imuran (tried methotrexate but not much help, anti-malarial drugs didn't help joint pain). I am really concerned about the side effects of these drugs. I would appreciate any information. I didn't mention, but I just turned 50 and work 2 full-time jobs - I teach at a public school (art) and at a university. My doctor has told me to stay as busy as I can as long as I get some rest time. Would love to hear others stories too. Thanks for letting me join.

    Kim

  2. #2
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Default

    Hi kim :lol:
    Welcome to our family. I am so glad that you decided to join us and you will find that this particular support group is truly just that.. a "Support Group". Our members are very knowledgeable, informative, understanding, comforting, non-judgmental, and always here when you need them!
    You stated that you are taking Imuran, are you taking anything else? When you were on the Plaquenil, did anyone advise you that it could take weeks or even up to a month before you can see/feel the real benefits of Plaqueni? However, when the benefits do become obvious, the drug usually works very well.
    You asked for information about Imuran. I hope that the following information is helpful to you.

    Imuran is the brand name for the generic drug Azathioprine. Azathioprine is classified as an immunosuppressant medication. Azathioprine was originally used to suppress the immune system in patients who have had kidney transplants. It has also been found to be effective in suppressing the immune system in Lupus (It is used to reduce the body's natural immunity in patients). Imuran is usually given to Lupus patients who are also taking Prednisone (or other Corticosteroids). If it works successfully, a patient should be able to reduce the dosage of Prednisone and/or hopefully eliminate the need for prednisone in their Lupus treatment plan. Prednisone should not be stopped with the addition of Imuran to the treatment. Prednisone dose should remain the same until there is improvement shown after being on the Imuran. Then, the prednisone should be tapered slowly at one to five milligrams a week to avoid problems.

    If Imuran is working, after about 3 to 12 months you should notice a gradual improvement in how you feel. This improvement can be measured clinically by the decrease in the number or your symptoms or a decrease in the severity of your symptoms, and in the need for less prednisone.

    Azathioprine sometimes causes nausea or vomiting. Taking this medicine after meals or at bedtime may lessen stomach upset. If you vomit shortly after taking a dose of azathioprine, check with your doctor. You will be told whether to take the dose again or to wait until the next scheduled dose.

    Now, the side effects:
    Imuran may pose a risk of cancer if it is used for a prolonged time. However, Imuran is a long-term medication and, for some, its use must be indefinite. Imuran may cause some bone marrow suppression and elevation of liver enzymes. Therefore, while taking the drug, your doctor will run regular blood tests in order to monitor you for significant changes.

    As I mentioned, some patients may have to stay on this medication indefinitely. Imuran is a long-term treatment and you should be aware that the majority of improvements occur during the first year of therapy. Please know that, as with many drugs, improvement will be gradual and it may take several months before you see significant improvement.

    Dosage varies from 100 mg. to 200 mg. per day. You must ALWAYS take the medication exactly as it is prescribed by your doctor and never increase, decrease, or stop taking this medication without your doctor's approval and monitoring.

    I hope this information was helpful, please don't hesitate to let us know if you need anything further. And, again, Welcome!!

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

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    Default

    Hi Kim,
    Welcome to the forum. I will be 50 in December and I also have SLE, Lupus and I am taking Plaquenil and Imuran and Sulindac. I am wondering why your doctor did not put you on an NSAID for the inflammation. The Imuran is a good drug. I have been taking it for a long time and it helps me a lot. I hope that you keep posting.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  4. #4
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    Default great info

    thanks for the responses. My doctor had me on methotrexate first but I was having sores and outbreaks after 4 weeks. Then he put me on the plaquenil and my symptoms worsened immediately so that is why I am on Imuran. I also take aspirin once a day, but need to be careful because I also am on blood thinners. This is new to me, but the Imuran seems to already be helping a bit. Although it makes me a bit sick. I am now riding my bike 6 miles or so most days. Walking is harder for me and I have to fight the tired feeling. What tpes of exerices do others find most beneficial and do you know of any dietary helps?

    thanks again

    Kim

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