Wegeners treatment.

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My mother was diagnosed with wegeners. She has been in icu for a week and not improving at all. She is now on rituxan now and if it doesn't work they will do a plasma exchange. They said that is all they can do for her. Help. Not sure if she is getting out of icu. Anyone ever hear of someone pulling out of this? She is I'm in a ventilator and tried to get her off but with no luck she has to go back on.

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  • Posted

    My situation was very similar. The plasmapharesis turned things around for me.  I was on the vent twice and hospitalized 31 days.  I am doing well at a year and a half after diagnosis! I hope they do the plasmapharesis soon. Praying for you and your Mom! 🙏🏻

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  • Posted

    My situation is very much similar, Plasmapharesis was also done on me and I recovered immediately now recuperating at home after a month of hospitalisation last summer. Pray for your mothers speedy recovery and her Drs starts her on plasmapharesis.
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  • Posted

    Wish you and mom all the best! I was in and out of i.c.u. for several months. I had blood and plasma transfusion and also had 8 dialysis treatment. Plus countless pills, cemo. I had days I thought I would never leave hospital. that was 3 yrs ago, I'm doing ok now. Cont.

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  • Posted

    I also had rituxan and cetoxin infusions. I believe 6 total. Shortly after treatment, body began to slowly recover! Not many docs ever treated this crazy and rare disease. I feel for her!! I'll pray for her!

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  • Posted

    Hi Tracy.  

    If you need advice and support then please contact The Lauren Currie Twilight Foundation (http://www.thelaurencurrietwilightfoundation.org).  We are a vasculitis charity that can help with advice and our helpline is 0141 404 1184.  Alternatively our emails via the website are answered out of hours. 

    Hope your mum has improved.  

    Grant Currie 

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  • Posted

    Hi Tracy,  I see it has been a week since your post.  How is your mom?  The same thing happened to me 1 1/2 years ago. Please tell us how your mom is doing.  Sending prayers your way. 
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  • Posted

    I was given a 30% chance of living when they did the plasma exchange.  That was 3 months ago.  I am now home and back to normal.  Don't give up.  It took me 3 tries to get off the ventilator.  She will do better.  It is slow.  I was in ICU for 4 weeks.   I will keep her in my prayers.  Wegener's is a very rare disease.  Only 6 people including me are being treated in Missouri.

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    • Posted

      Take care Sandy, Wishing you all the happiness to you, your family and friends for your speedy recovery. Will keep you also in my prayers.
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