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Thread: Finally getting off Preds

  1. #161
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    Rose today I feel like not moving and just laying in bed. I I had to get up and take care of two kids, but right now I am in bed watching TV and on line. Glad you have a Case manager, hope you start to get better and write down your questions for the 26th. Keep your head up!

  2. #162
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    Hi Moyan, I understand there is a problem with the contacts I sent you. I am trying to get through to someone there myself, but have not had a reply. I will persist. I have had a great deal of trouble with my computer and did not have any addresses for a while. I hope you are OK. I did try to call you again, but there was no answer. Germaine

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    Germaine, have you seen the thread "Where is Moyan?" She's in the hospital. Jolanta finally tracked her down. You can send Jolanta an email for Moyan and she'll make sure she gets it.

  4. #164
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    Hey Germaine, my email is [email protected]. Please send what you have. I will see Moyan this weekend and make sure she gets it.
    Jolanta

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    hope you are feeling better, it took several days for me to start. am not used to having to push just to get ordinary things done and it is frustrating. how old are yur 2 kids? my grandaughter tells me to hurry and get well so we can play again. lol may have a UTI, got my lab results and kidney function went down 10 pts and wbc went up. some scores improved but no wonder i feel tired. oy would love for thngs to settle down to a dull roar, wouldnt you? saw the note on moyan, hope she does ok. take care.... rose

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    Quote Originally Posted by Rose Cozzette View Post
    hope you are feeling better, it took several days for me to start. am not used to having to push just to get ordinary things done and it is frustrating. how old are yur 2 kids? my grandaughter tells me to hurry and get well so we can play again. lol may have a UTI, got my lab results and kidney function went down 10 pts and wbc went up. some scores improved but no wonder i feel tired. oy would love for thngs to settle down to a dull roar, wouldnt you? saw the note on moyan, hope she does ok. take care.... rose
    HELP! i hope someone can answer me quickly. my rheum doc had blood work done and it shows a kidney problem. so now he wants to raise the preds from 12 1/2 mgs to 50 saying its the only thing taht will correct it. i read that going back on cytoxin is the way. the kidney doc wasnt concerned abt it enough to do anything. what do it do?? the side effects will be awful. i see him tomorrow to talk abt it and hes already upset with me for not just doing it without talking abt it. i am in a real bind.

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    hi rose
    i had same problem oct last year and my wg specialist changed my meds from 20mg preds to 60mg and from 25mg mxt to 150mg 0f cyotxin on the same day as blood results
    he has been dealing with wg for over fifteenyears and has reasearch papers on it he also confirmed diferent treatment with my renal doc
    hope this is oof some help
    the new treatment soonn began to help kidney problem DEEx

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    sorry about the spelling mistakes brain not working on all cylinders today DEEx

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    what were your side effects? and did he say if the mxt was causing the problem? i read that mxt does cause kidneys to act up. did you stay on that level of preds or taper down and if so how long did it take? i think mxt is a big problem for some of us. i was doing so well until the mxt and now also my eyes are so blurry and of course the stomach distress as with so many meds. thanks.

  10. #170
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    Sorry Rose, I think the methotrexate doesn't work on everyone and sometimes the doctors need to put you on a different medicine. If your kidneys are in danger....yes the doctors would increase the prednisone and put you on cytoxan or some other immunosuppressant. The prednisone temporary reduces the inflammation that the WG is causing and lets the other immunosuppresant to kick in.
    Do you have a Wegener's specialist and if not...ask your doctor to call one....that is on the Vasculitis List. I love mine at the Cleveland Clinic in Ohio, I know everyone love's their WG specialist. That way you will feel better about the situation, you don't need the added stress.
    Rose call your doctor today and ask.

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