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Thread: 13 year old just diagnosed

  1. #41
    Doug Guest

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    The frustrations of seeing or experiencing old symptoms, wondering if there's been a change one should take to a doctor, is one we all experience. I hope you get yours in control with you Prednisone change, Jack. Bleeding always is more alarming than most symptoms. To me anyway.

  2. #42
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    Default ears being clogged

    The Rheum has me reducing me prednisone 1mg every two weeks. I am down to 7mg and have felt more sinus pressure on the left (maxillary) and left Eustachian tube clogging up too. It's frustrating because this has been a issue for the last 18 months ( infection? WG? reduction in pred? virus?). So I been thinking mabey I need to increase my pred to 10 mg. I see a really good ENT in Charleston, SC on Friday. He will take a look and mabey give me some insight. I had four maxillary surgeries in the last 18 months. I guess this disease keeps us on our toes.

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    Elephant, many people find that reducing the pred on alternating days helps them taper below 10 mg without triggering a flare. Please check with your doc, of course.

    So let's say you're at 10 mg and want to start lowering it. Instead of dropping it to 9 mg, you'd take 10mg one day and 9mg the next, alternating 10-9-10-9, etc.... Do that for a week or two, then stay at 9mg daily for a week or two. (You may have to stay at one level for longer or you may have to drop it by 0.5 mg.)

    Please don't do this yourself and let your doc know what you're doing. Also, pay attention to your symptoms. If your reliable indicators start popping up, tell your doctor right away.

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    elephant - see my previous post. I can't get below 10mg without experiencing problems so that is the level I'm sticking with.

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    Thanks Sangye and Jack for the input. Jack did going up on the prednisone 10 mg stop the full feeling in the ear? I was told by my rheumy at Cleveland clinic that the sinuses don't like it when we drop the prednisone below 5mg. The ENT will take a look with his scope ( up my nose and max) and hopefully the maxillary has stayed open. I will call my Rheumy the one in town Monday and let her know about my visit with the ENT.

  6. #46
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    Not sure of the effect yet, it's only been a couple of days. I live in hope.

  7. #47
    Doug Guest

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    Best wishes to you all.

  8. #48
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    Jack I am wishing you well. That crusting of the nose is something I have never been rid of.
    Lisa

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