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Thread: Need a referral

  1. #1
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    Default Need a referral

    Hi all!

    I hoping you can provide some insight and direction. I was diagnosed with Wegener's a year ago. Not a classical presentation but I am C-Anka and P3 positive. I have so far opted not to take Rituxan or methotrexate -- and am trying to manage my symptoms with prednisone alone. This may be incredibly naive and stupid, as I have osteopenia. I have been doing a lot of reading and research and well I still cannot seem to get to a place where killing all my b-cells many times makes sense to me and I am very worried about getting a serious respiratory or other infection being immune compromised for such a long period. Needless to say, my rheumatologist (a vasculitis specialist) and internist (who has never seen a Wegener's patient) are seriously advising that my course of action is dangerous, etc. I have even started to see a therapist as I thought perhaps I am experiencing the five stages of grieve and I am just in denial.

    I am looking for a second opinion. I am willing to go anywhere. Ideally I am looking for someone with significant experience treating many Wegener's patients -- as each of us are unique and may require tailored treatment options -- someone familiar with current research, etc.

    Any advice or recommendations would be greatly appreciated.

    Anyone going to the Vasculitis conf in Minn in July?

    E

  2. #2
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    Default Re: Need a referral

    Sorry you're in confusion about how to treat WG. It's complex, you've got that right. Avoiding the drugs used to lessen WG effects, both long & short term probably isn't the wisest way to go. IF there were circumstances keeping one from using the correct drugs, then one must follow those. But, stats show these drugs do reduce the effects of WG and produce a remission for many. I'm one. I've had 2 flares in 8 years, taken my drugs, and got thru each one with minor damages, unavoidable.

    I'm at Mayo in PHX. Best care ever, and yes, they do use those drugs. Their basic attitude is 'knock it down, then kill it if you can'...that takes drugs. Side effects are minimal considering the state the illness is in at that time. Mayo used MTX first time, worked well after 2 months. This flare they used Rituxin on me...I had choices like you, but happen to believe the same as Mayo...get after it!!! The RTX took immediately and after 2 infusions, I feel pretty normal again...golf game sucks right now due to the flare, but I will be/am back again...it's a life battle E, keep on fighting! You'll find the right control methods.

    BTW, you didn't share your location, and that may help some others on here give you a closer referral. Best to you!!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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  4. #3
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    Default Re: Need a referral

    Thanks for the immediate response and for the advice!

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    Default Re: Need a referral

    I see Dr Alexandra Villa Forte at Cleveland Clinic. In the nearly seven years sheís treated me, Iíve been on methotrexate and rituximab. Current meds are an annual dose of rituximab and bactrim 3x weekly. Iíve been off prednisone for almost a year.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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  7. #5
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    Default Re: Need a referral

    Hi Nancy,

    During my first 4 years of wg, my docs who were totally ignorant about how to treat wg, treated me the way you do: by pred only, plus 1-2 years of bactrim. They had thought that I didn't need immune suppressed meds.

    They were very wrong.

    The result was that the wg continued to progress, untill the bridge of my nose had collapsed and I developped a saddle nose. No wonder, after 4 years of nose bleedings and crusting.

    The more they waited with giving me the right treatment, the more the wg had become stubborn and harder to treat later, when they finally started with immune suppresed meds.

    I couldn't bear Imuran, mtx didn't work for me and only after 2 rounds of rtx (6 months between) and 9 months since they started, the nose bleedings had stopped.

    Dont wait. Wg can attack more organs. The more you wait, its harder to treat.

    Find a wg expert and ask for the right treatment.

    Also - pred, espcially high pred - suppress the immune system too. Also I got cataract and ostheopenia from it. The longer you are on the pred, the harder it is to quit it eventually. I can never stop the pred now. I am on if for life.
    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.

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