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  1. #1
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    Default Recent diagnosis and new to site

    Hi
    I am Lisa
    62 years
    one beautiful daughter
    Live in Belfast northern Ireland
    Retired in March from my job as genetic counsellor
    Diagnosed with GPA in May 2020 - rubbish way to start retirement !!!


    I was a fit and healthy 60 year old. Walked part of the Camino with 6 girlfriends for my 60th birthday. Only past medical history was low thyroid picked up in mid 40's so started thyroxine. Also have high cholesterol but am not overweight and have a good diet. In April last year I woke up one morning and had diarrhoea, no other symptoms. I had this every day for weeks but just put it down to a viral infection. i was due to have a sailing holiday in Croatia IN JUNE SO THOUGHT I SHOULD SEE A DR. Ran lots of blood tests, all normal. It subsided in July and I never really had a diagnosis. In August developed inflammatory arthritis which saw me house bound for weeks. I was off work for 5 months - my only sick time in 18years. Saw a rheumatologist in January 2020. Diagnosed inflammatory arthritis and wanted to give me a steroid injection as first line of treatment. I declined the steroid as I did not want to start on those and I thought I was getting better slowly> was due to see rheumatologist again in March but Covid-19 happened and all outpatient appointments were cancelled.
    During March I got viral respiratory infections, sore muscles, pain in lung. Went to hospital ER and they told me I had Covid. That was end of April. In May I got unbearable burning in my legs, housebound again and put it down to Covid. Mid May lost complete sensation in my right foot. Off to hospital and was admitted for 9 Days and thoroughly investigated. Numerous scans, lumbar puncture and kidney biopsy. Confirmed GPA. Started on prednisolone and Rituximab. Still loss of feeling in my fingertips and both feet. I also have foot drop in my right foot so it will be some time before I recover from that> only now coming to terms GPA is now part of my life - I spent the last couple of months waiting for it to be over !!

    Great to have joined the forum and hear other peoples stories and any new developments that might come along.
    Thanks for reading

    Lisa

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  3. #2
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    Default Re: Recent diagnosis and new to site

    Hi Lisa
    Welcome to the club And what a rubbish time to get diagnosed too! I think the docs took the easy way out when they called it Covid. I wonder how often that happens. Seems like you got a quick diagnosis in the end though. I hope you're starting to feel better. The Arthritis was one of my initial symptoms too. The opposite of fun. How often are you getting Rituximab?

    Cheers
    Andrew
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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  5. #3
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    Default Re: Recent diagnosis and new to site

    Hi Lisa,

    Glad you found us, but sad you needed to.

    I was situated similar to you at disease onset. Age 64, pretty fit, and no other health concerns. Iím over nine years in now, and have gotten back to pretty much my pre-GPA lifestyle (adjusted for age&#128526. I hope you can resume physical activity soon. It will be beneficial both physically and psychologically).

    Keep us informed of your progress. Good luck and better health!!
    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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    Default Re: Recent diagnosis and new to site

    Sorry you had to join our distinguished and elite group, but glad you found us.

    I recall I also ended up in the hospital three months after I officially retired from any work position.

    Were you ever tested positive for Covid-19? Or was that just one of the guesses they gave you to try to explain your symptoms. I remember when I was so sick I couldn't get out of bed and went to the hospital to begin my long treatment for Wegener's granulomatosis. I was given three diagnoses upon admission and none of them proved to be correct. Before I got sick enough to be treated inpatient I had also been given several other incorrect diagnoses as to what was causing my GPA symptoms.

    Glad they finally sorted it out so you can get the correct treatment and hopefully attain better health in the near future.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Recent diagnosis and new to site

    Thanks Andrew. So good to hear other peoples experiences because when you get a diagnosis of GPA its pretty awful as most people like me will never have heard of it previously but you need to learn fast !! I have just had an initial dose of rituximab in May while i was in hospital and that was followed up 2 weeks later as an outpatient with another dose. I think this is just counted as one dose- its just halved to check you can tolerate it ok. I reckon I will get another dose in 6 months so probably around December. Still on prednisolone 15mg but that has been tapered down from 40mg initially. Im due to see my nephrologist in a fortnight so he may change medication again.
    All things considered Im doing fine> Still have loss of sensation in hands and feet and the drop foot exacerbates it but I am able to go out for walks which is great.

    Im a positive person so that helps and with the lockdowns I don't think Ive missed too much !!

    Cheers
    Lisa

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    Default Re: Recent diagnosis and new to site

    Thanks Pete
    That is heart warming to hear you are back to health pre GPA. I am hoping for the same outcome .

    Lisa

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    Default Re: Recent diagnosis and new to site

    Thanks DRZ
    Sounds we had a bit of a similar experience. I was diagnosed with Covid on a CT scan of my lungs. My chest X- ray was completely normal. I had gone to the ER with a pain in the lung which I thought was pleurisy and my GP told me to go to ER to rule out a clot on the lung. I was very surprised when they told me I had Covid and suspect they have seen some sort of inflammation but my other autoimmune symptoms were not taken into consideration as they just dealt with my lungs.
    Anyway I am relieved I have some sort of explanation for the past years illness and will be doing what I can to get back to good health.

    BW
    Lisa

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