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  1. #1
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    Default New Member

    Hi,
    My name is Robyn. haven't got Wegeners but my partner, Philip, does. He was diagnosed approx 6 years ago, when he was 36 years old.As I wasn't with him at the start I am still learning the ins and outs of this disease. He has been having infliximab infusions for the last 6 months and that seems to ease the symtoms for a couple of weeks after each infusion. It's the other weeks that we are having trouble with at the moment.
    Anyway, I'm very pleased to have found this site as my medical ignorance is catching up with me. I have found it very useful already. It's nice to know others' stories.
    We are going to Princess Alexander for another infusion tomorrow and hopefully Phil will be able to get some quality sleep after this.
    Robyn

  2. #2
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    Hi Robyn and welcome!

    Please give my best wishes to Philip for his infusion tomorrow.

    Where did the WG affect him? Lungs, sinus etc? What drugs have the docs tried in between infusions to try and keep a lid on the symptoms?

    I'm glad you found us!
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  3. #3
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    Default Scattered History

    Thank you for the reply.
    Phil is having a bad day today so I'll try and fill you in a little bit on what meds he has had in the past.
    I know that he has had a lot of prednisolone but is not on any at the moment. Apparently he had Imuran as well. (With major vomiting) He also had Pantoprazole 40mg / cyclophosphamide 50mg/ trimethorprim sulphamethoxazol E 80mg - 400mg/ergocalciferol 1000u capsules. This was all before he started on the infliximab infusions.
    He nearly went blind but Dr Hurst diagnosed his Wegeners and managed to save his sight. Apparently the prenisone was causing damage to his liver so that was canceled for a bit.
    His biggest problem at the moment is his breathing and jaw and teeth and his joints.The pain is going from his throat to halfway down his chest. He said it feels as if they are being squeezed. He can't breath properly and as such is not getting much sleep.
    Between the infusions he is having antibiotics but had reactions to two different types. The cleocin seem to be okay. He is currently taking celebrex 200mg (joint pain) and tramal and is trying endone 5mg (pain killer). Though this is not doing much good. Valium seems to help a little bit.
    We wil be consulting the immunologist tomorrow in Brisbane when we have the infusion so hopefully will be able to work something out with this breathing thing. From what I've read on this forum it seems that he might have tracheal stenosis?
    Thanks for the well wishes.
    Robyn

  4. #4
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    I only have personal experience with the Pred, Imuran and Cyclo but it certainly seems as though he's been through the wringer, poor bloke

    I go to a fantastic Immunologist here in Canberra. He works at the National Capital Private Hospital. His name is Prof. Paul Gatenby and he has a brain the size of a planet. If you're looking for another opinion or if you're not happy with Philip's progress (or lack thereof), he might be worth contacting. I'll send you his phone number if you're interested.
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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