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  1. Replies
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    Re: Just diagnosed from Queensland Australia

    Welcome Rob.

    Your story very similar to most on this site with classical initial symptoms of Wegs. So glad you put the pigheadedness aside and got that diagnosis early. Glad you found this...
  2. Thread: Eight years later

    by Rose
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    Re: Eight years later

    Hi Jana

    I am really sorry to hear about your problems. Why does your Rheumy think you are in remission? I Know that intestinal flares caused by Wegs often do not show with the usual...
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    Re: Pred Taper Completed

    1 mg tabs of pred are not available in South Africa. When I was tapering I was told by my pharmacist to dissolve the 5 mg tab in 5ml of water. So when reducing to 4mgs would take 4ml of the water,...
  4. Thread: First Flare?

    by Rose
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    Re: First Flare?

    Just to add to my tip above .........After washing. I let my hair dry about 90% naturally and then dry using a hairdryer with a diffuser attached for the last 10%. Looks a bit wild after using the...
  5. Thread: First Flare?

    by Rose
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    1,298

    Re: First Flare?

    Dont have tips on stopping hair loss but a good tip on how to look as if you have a fuller head of hair.

    In the shower. wet hair. Then apply lots of conditioner to hair. Not shampoo at this...
  6. Re: cervical changes in menopausal woman due to Methotrexate?

    I was advised when first diagnosed to have regular pap smears as any type of immuno suppressant therapy renders you more at risk of developing cervical cancer. So changing your drug that you are...
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    Re: Ear issues - experiences

    Saw my Rheumatologist the other day. Blood work is a bit off. Raised Liver enzymes and CRP at 7 ( has not been over 5 for a few years). The fact that I am still having symptoms of fullness and...
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    Re: Ear issues - experiences

    It has been about 6 weeks now when I first experienced my recent ear problems. The ENT I consulted tells me it is a virus affecting my middle ear and has left it at that. His treatment with upping...
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    Re: Gastro. Issues - Others?

    Below is my experience with GI Issues. It does show that WG actively attacking the GI system may not show up in regular blood work.. it certainly did not with me.


    I consulted a Professor of...
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    Re: Memory loss and vertigo

    Thanks NatriceRomeo. I have seen PML mentioned before on here but actually had forgotten about it. Glad I had or I would have been extremely worried...and I do take Cellcept. As it happens I...
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    Memory loss and vertigo

    For the past few week I have been suffering from ear issues main initial symptom being fullness, and tinnitus. Contacted Rheumatologist after a few days and he increased my pred to 15mgs daily with...
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    Re: Ear issues - experiences

    HI Elena

    I am experiencing ear issues myself at the moment. I have been In remission over 9 years but have had a few flares in my ears and sinuses during this time. An increase in prednisone...
  13. Thread: Wegeners is back!

    by Rose
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    Re: Wegeners is back!

    Interesting post. My Rheumy has told me from the get go that I will be on drugs for life. According to him the risk is too great of Wegeners returning and doing even more damage to already damaged...
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    Re: New member. Newly diagnosed.

    .......and there is a good chance we have come across them before. This is what I found very comforting about this forum. All those weird and wonderful symptoms when, whilst explaining them to the...
  15. Thread: Anemia

    by Rose
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    Hi Jacqueline My HB was 9 on diagnosis when my...

    Hi Jacqueline

    My HB was 9 on diagnosis when my kidneys were failing. My kidney function and HB improved with treatment and my HB has stayed in the low normal range for the past 9 years. There...
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    What has been a feature for me with this disease...

    What has been a feature for me with this disease is that I cannot exert myself. My first symptom was in 1989. My story is well documented here on n other threads so I won't repeat myself. Just...
  17. Thread: Cellcept

    by Rose
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    I have been on generic Cellcept since January...

    I have been on generic Cellcept since January 2009. I take 750 mgs x 2 daily. I have had a few flares over the years and they were treated with a temporary increase in Prednisone whilst remaining...
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    This is something I had intended to ask the group...

    This is something I had intended to ask the group myself.

    I do have lung and kidney involvement. I take Cellcept 750mgs x 2 daily and have done so since January 2009. It took me a few years...
  19. Thread: Sick & Tired

    by Rose
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    6,541

    All my flares have been whilst I was on...

    All my flares have been whilst I was on maintenance treatment just like most WG patients. The response to a flare is a temporary increase in current maintenance medication usually just prednisone. ...
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    HI Lovetoswin and Annekat If you put the word...

    HI Lovetoswin and Annekat

    If you put the word 'Vertigo' into the search box you will find the thread I started when I first began experiencing symptoms. It is on page 3 of the archives and dated...
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    I have posts about vertigo I was experiencing in...

    I have posts about vertigo I was experiencing in the archives. Eventually had an MRI and was diagnosed with Mastoiditis. The problem the ENT had is that he did not know if this was caused by Wegs...
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    Hi Lovetoswim I think when Wegs attacks the...

    Hi Lovetoswim

    I think when Wegs attacks the vital organs like the lungs and kidneys then you are looking at that scenario. Wegs, I am sure, can be present for many years without treatment. I...
  23. Thread: Sick & Tired

    by Rose
    Replies
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    Alysia before the repeat attacks of...

    Alysia before the repeat attacks of diverticulitis in 2015, I had been suffering from attacks for around 10 years. I had my first attack in 2005 (3 years before Wegs diagnosis) when I was 55. At...
  24. Thread: Sick & Tired

    by Rose
    Replies
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    6,541

    Alysia, I also had high inflammation markers in...

    Alysia, I also had high inflammation markers in my stool when I had the bowel flare ....apparently not as high as a Chrones patient or someone with ulcerative colitis but high nevertheless. As I...
  25. Thread: Sick & Tired

    by Rose
    Replies
    89
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    6,541

    Sorry to hear that you are still battling with...

    Sorry to hear that you are still battling with the bowel problems. Praying that you get some answers and relief soon.

    Rose
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