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    Hi Leah, Here is a link to the site where I...

    Hi Leah,

    Here is a link to the site where I have gotten bands for Keith. They have a pocket in them where you can put emergency contact information as well as a list of medical conditions and...
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    I am so glad you responded Mica because I have...

    I am so glad you responded Mica because I have never come across anyone who has taken it as long as Keith. I am glad it has helped you. I agree with you that it is better to be overly cautious. It...
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    Those are his initials but we call him by his...

    Those are his initials but we call him by his first name, Keith.

    Thank you for all your responses. I feel so blessed that he is doing well. His labs came back perfect today but his doctor has...
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    Looking for advice on Cellcept

    My 15 year old son has been on Cellcept now for 5 years and praise God has been in remission for 4 years. He was diagnosed at the age of 10 with SLE and Lupus Nephritis class IV. He received 3...
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    Question about chest pain

    Can chest pain with movement be part of SLE? My 12 year old son has been having pain on and off in his chest when he moves. He said it feels like nerve pain.He had similar pain when he was diagnosed...
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    Thank you so much!

    You are always full of so much good information Saysusie!! You definitely answered my question. Thankfully my son has never had problems with clots but I will mention this to his doctor when we see...
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    More info

    Thanks for your response Saysusie- He has been taking Cellcept for 9 months now and was just taken completely off Prednisone after being on it for a full year. He has had CBC and chem panels done as...
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    Antiphospholipid antibodies

    Does anyone know how often you should be tested for apls after an initial mildly positive result? As labs improved, the result came back negative and the doctor stopped baby aspirin. Is it safe to...
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    Rash on lower arms

    My 11 year old son was diagnosed with SLE and lupus nephritis last June. Since then he has done extremely well on Prednisone and Cellcept. He is currently being tapered off Prednisone and is down to...
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    Lupus Nephritis and Prednisone

    My 11 year old son has been taking Prednisone for lupus nephritis since he was diagnosed 6 months ago. We would like to hear from others with lupus nephritis who took prednisone about how long they...
  11. Thread: Happy Holidays!

    by KCsMOM
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    Happy Holidays!

    Just wanted to wish you all Merry Christmas and Happy Holidays. This year has been one of a lot of change for our family after our son was diagnosed with Lupus and when I look back at the many...
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    Sorry so late

    Thank you for your responses. I am sorry but for some reason I did not even see them until now. My son's Dr. stopped the Cytoxan after his third tx. His lab results had dramatically improved and he...
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    Diet and dosage of prednisone

    :D My son is curious about how low of a prednisone dosage some of you were on before you could stop watching your sodium intake so carefully. He is extremely careful and his doctor has told him that...
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    The doctor has been tapering 5mg every 2 weeks....

    The doctor has been tapering 5mg every 2 weeks. Right now he is on alternating 40/30mg. He has explained that this is a slow process and when he has done it too quickly in the past with other...
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    :) Thanks so much for looking Saysusie. I have...

    :) Thanks so much for looking Saysusie. I have also looked all over the internet and it seems that from other people I have talked to the "normal" is about 5 to 10mg every 2 to 4 weeks and then once...
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    Guidelines for tapering Prednisone

    My 10 year old is currently taking Cellcept and Prednisone for Lupus Nephritis. Does anyone know approximate guidelines for tapering Prednisone at this age? I am very interested to hear from people...
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    Duration of Cytoxan and remission length

    Does anyone have any information regarding the how the number of Cytoxan treatments affects the length of remission for lupus nephritis? I have looked all over the internet and have not been able to...
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    So glad you are feeling better Racinie. It is so...

    So glad you are feeling better Racinie. It is so great to find people with such positive attitudes. When my son was diagnosed, the first thing that we were told was beware of the internet. Of course,...
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    "Locking Fingers"?

    About 3 months ago, before my son was diagnosed, he had a trigger finger on his pinky.
    Now he sometimes feels that some of his fingers are trying to "lock up". It's uncomfortable but not painful....
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    Thanks and Gratitude

    What a great way to start the day. Thanks so much for the post Hatlady.

    I'm grateful for every smile from my husband and son,
    Hazelnut coffee on a cloudy day,
    Free time with my family,
    A...
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    So glad you're back

    Hi I Love History,

    Just wanted to let you know that I'm so glad you're feeling better. :D

    Prayers for all good things,
    Beth
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    Hi Saysusie

    We saw the doctor today and he said that the numbness could be from the prednisone but it could also be from the lupus itself. He said that it is something that he will definitely be mindful of but...
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    Numbness in back

    Has anyone ever experienced numbness that comes and goes under your shoulder blade? My son says he has numbness on and off on his left side where he has put on extra weight from the prednisone. It is...
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    You are awesome!

    Hi I Love History,
    I just wanted to tell you that I have a read number of your posts and I think that you are a wonderfully strong and intelligent person. You are so incredibly kind and supportive...
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    Hi Babs

    I do not have lupus myself but my 10 year old son was diagnosed with systemic lupus and lupus nephritis at the end of June. I know how hard it is to wait for all the results. Of course we never...
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