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Thread: pberggren memorial thread

  1. #151
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    Praying while keeping my fingers crossed!!
    I am a strong person, but every now and then I also need someone to take my hand & say everything will be alright....

  2. #152
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    Igg today is normal. Do yoy think Phil should get more Igiv Iv ? We dont know yet what they decide. Please help.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  3. #153
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    My sweetie is on pred 80mg. 40 twice s day. The docs didnt decide yet if they are going to reduce it. I think they shouldnt. What do you think ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. #154
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    Quote Originally Posted by Alysia View Post
    My sweetie is on pred 80mg. 40 twice s day. The docs didnt decide yet if they are going to reduce it. I think they shouldnt. What do you think ?
    80mg isn't a HUGE dose (but certainly high enough to have it's effects), so at this stage I wouldn't expect it to be reduced.

    Glad to hear his Igg is normal today. I must be tired or suffering from "pred dumbness", but can't think what Igg is??
    Diagnosed April 1995

  5. #155
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    I'm glad IgG is normal; that is a lot better than being almost zero, like the other day. Gilders, from what little research I did, it stands for Immunoglobulin G. What the G means, I don't know. But it is apparently what Phil is getting from the IgIV.

    Alysia, my gut feeling, based on NO expertise whatsoever, is that he should keep getting the IgIV. I thought I read that people usually get it for a few days. But the ones who have had it or have more knowledge are the ones who should answer. I also feel that he should keep getting the 80mg. pred as long as there is still a lot of inflammation. Just my two cents worth.
    Anne, dx'ed April 2011

  6. #156
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    This update is going to remain on the forum only. Please be careful that it will not leak to facebook. Phil doesnt want to make his parents scared. We had a serious talk with the ICU doc today. They cant tell what is going on, if it is an infection or WG or both. He said that it might be the lungs scaring, proggresively. In this case they cant help. I cant stop crying since that talk. Its so scary. So painful. Phil is also scared and sad. Plesse pray. If any one had any idea what it can be, please help. I asked the doc to consult and he said that he will consult with dr. Fauci. Next Igiv IV on monday.
    Last edited by Alysia; 09-27-2014 at 11:29 AM.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  7. #157
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    Alysia, this is scary. If Phil can get through the infections or Wegs flare, whichever it is, or both, and be stabilized, maybe a lung transplant would be the next step. I don't quite understand why they are having so much trouble determining if infections or WG are involved. Peace and hope be with you both. Love and prayers are sent in your direction, all day and all night.
    Anne, dx'ed April 2011

  8. #158
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    I'm praying for Phil! He was the firs to welcome me and I'm sure many others to the forum. This is sad news. I'm sorry. I know there are a lot of people praying for him and sending him well wishes. Get better Phil! We're all rooting for you!


    😃 victoria
    Live well.
    Victoria

  9. #159
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    I too hope that his condition will improve soon, I am a fairly newcomer to this site and have been reading these updates. On the pred. I wouldn't be concerned with the 80mg dose, I also took 40mg twice daily out of the hospital, but up too 500mg during my stay. Again I hope his condition turns for the better very soon!
    Dx'd December 2000

  10. #160
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    Oh man, progressive scarring (progressive fibrosis) is terrifying. I pray it's not that. It can be very difficult to tell Wegs from infection. It's happened to me a number of times. This is a lot for you to carry, Alysia.

    80 mg of pred day after day is a huge dose. The higher doses like 500 or 1,000 mg solumedrol are used only for a few days when someone is in acute crisis. It's not safe to keep him on 80 mg of pred for very long at all. That's certainly enough to knock down the Wegs if that's the underlying problem, but it does make it more difficult to get an infection under control. It's a terrible choice. You must get a Wegs specialist involved, and at this point I would recommend getting more than one to help.

    Keeping Phil in my prayers.

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