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Type: Posts; User: Barry Forshaw

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    Alicia finished her maintenance doses of...

    Alicia finished her maintenance doses of Rituximab about 4 years ago, and since then the only drug she has been taking is Omeprazole, because her stomach was affected by all the drugs she took early...
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    Haha! If the vet was anything like Supervet...

    Haha! If the vet was anything like Supervet, we'd have Wegener's licked in no time!
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    Absolutely true. Alicia is living, breathing...

    Absolutely true. Alicia is living, breathing proof that it can work, but everyone has different symptoms relating to their Wegener's and may react to the treatments differently. I think we can be...
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    Yeah, Alicia's hair thinned when she had...

    Yeah, Alicia's hair thinned when she had Cyclophosphamide. It didn't come out in clumps like you sometimes see in the movies. It grew back over 6-9 months after she stop the Cyclo and started on the...
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    Alicia has been in remission for several years...

    Alicia has been in remission for several years now. As others have mentioned it is a slow process of daring to hope that there will be no more flares. Six months turns to a year, and that turns to...
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    This is terribly sad news. Phil was such a big...

    This is terribly sad news. Phil was such a big personality on here, it just won't be the same.
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    Alicia gained a lot of weight (approx 5 stone)...

    Alicia gained a lot of weight (approx 5 stone) after taking steroids and lost around 6 stone over the course of a year, and as a result has stretch marks from her shoulders down to her knees. At...
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    Very sorry to hear this news. It's desperately...

    Very sorry to hear this news. It's desperately sad. My thoughts go out to Barbara's family.
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    Wow. Thanks for your incredible words LisaT....

    Wow. Thanks for your incredible words LisaT. :biggrin1:

    Alicia is doing well at the moment. She is very tired as all new parents are, I guess! Alicia was due to have another dilation on Friday but...
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    Alicia had a flare of Wegener's in her teeth and...

    Alicia had a flare of Wegener's in her teeth and gums. It was written up as a case study here: Elsevier

    She was treated with rituximab and has any subsequent dental work done at the dental...
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    Thanks for all of your supportive words. I'm...

    Thanks for all of your supportive words.

    I'm sorry to hear about your story Lilly. It's something we expected to have to deal with and we were fully expecting a long battle and possibly IVF,...
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    Wegener's and pregnancy

    My wife Alicia was diagnosed with Wegener's in 2005 and had her first baby in 2013. I wrote a book about her experiences, and I thought I would share one of the chapters about her pregnancy on this...
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    Hello Heather. What a story you have! Thank you...

    Hello Heather. What a story you have! Thank you for sharing. I'm sure you'll find a lot of help and support on this forum to get you through the next 2 years.
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    That's great news! Support and understanding are...

    That's great news! Support and understanding are sometimes undervalued when dealing with a disease like this. Let us know how you get on.
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    Audrey gets her looks from her mother! :tongue1:...

    Audrey gets her looks from her mother! :tongue1:

    Thanks for your comment Phil. I hope you are keeping well. As well as interviewing Alicia about a million times for the book I also talked to her...
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    That's great. Good luck!

    That's great. Good luck!
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    That's a great idea Alysia. I may have commented...

    That's a great idea Alysia. I may have commented on other people's threads regarding pregnancy but I never considered starting one.

    Thanks for the birthday wishes annekat. Here's a pic of Audrey...
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    I don't want to give away the ending of the book...

    I don't want to give away the ending of the book but...

    Alicia is doing well, has been in remission now for several years after two major flares. The biggest miracle was that we now have a healthy...
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    My wife was looked after by Mr Welch and Dr...

    My wife was looked after by Mr Welch and Dr Higgins at the Freeman Hospital in Newcastle upon Tyne. She was diagnosed in 2005 and after Rituximab and a couple of flares she's been doing well.
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    Thanks mishb! The book is only available as an...

    Thanks mishb!

    The book is only available as an e-book for Kindle at the moment - there's no print book. No worries about it being delivered than, as it's all electronic.

    I'd love it if you'd...
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    Alicia - My Battle with Wegener's

    Hello everyone
    I haven't posted on this forum as much as I would have liked to over the past 6 months. The reason for that is that I've been busy writing a book all about my wife Alicia's battle...
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    Great discussion! I find this fascinating....

    Great discussion! I find this fascinating. There's still so little known about it, no-one has the full picture yet.

    From what I can gather, Wegener's Disease is less common in non-caucasians, but...
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    According to the National Health Service website...

    According to the National Health Service website around 500 people each year are diagnosed with Wegener’s in the UK. It is estimated to affect 3 out of every 100,000 people globally. According to my...
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    The drug starting with P is probably Prednisone...

    The drug starting with P is probably Prednisone (prednisolone) which is a steroid. It would typically be given in quite high doses to start with and then be reduced over time as you go into...
  25. Thread: Stress

    by Barry Forshaw
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    I wonder if it might be the other way around....

    I wonder if it might be the other way around. What if the Wegener's is there lying dormant in the genes making some areas vulnerable to infection and disease? Over the years you have higher than...
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