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Thread: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

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    Default Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Hello All

    I am from San Francisco area and recently have been told that I might have GPA. Came as a complete surprise from what I went through in last one month. Happy to have a "name" to my pains but I am scared and confused on how the road ahead looks. So happy to see this forum and all the good support members have been giving others in the same boat.

    A month ago, I got in ER due to right kidney stone problem. During the exams at the hospital they found a stone alright but also found my left kidney in serious nephrosis (cause unknown). I had no clue or pains about the left kidney at all. While I was getting ready for the out patient surgery to overcome the kidney problems - I started getting severe joint pains and at one point just couldn't walk on my feet. Hands and feet muscles felt weak and when I stood up it felt like standing on very sensitive nerves at the bottom of my feet. Docs first thought was Rheumatoid Arthritis and was put on taper dose of Prednisone. It worked like magic and the pain was gone. I am in week 2 with 20mg prednisone per day and it seems to control the joints pain.

    Every day evening, however, I start getting back the pain and nights are tough. I have started seeing some high pressure in my eyes - but not seen any other symptoms that I read here like bleeding nose, difficulty breathing or tiredness. Just acute muscle and joints pains which keep moving from different parts of my hands and feet.

    Positive ANCA report and all inflammatory markers has made my Rheumatologist to suspect that I have GPA/WG. but I don't know if that's what it is. Many more tests to follow before I would know...


    • Anyone has had similar symptoms?
    • What other tests do docs do to pin point what type of vasculitis I have?
    • how long should I expect to be on prednisone?
    • any good doctors in this are you would recommend from your experience?

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    Default Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Hey there welcome to the forums! So happy they found the Kidney issues. Kidney's are weird. They don't give any warnings that they are on their way out until they're almost done. Pain at night sucks a lot. Has there been any mention of raising your Pred dose to perhaps eliminate or reduce the pains?

    Anyone has had similar symptoms?
    Yep I had the joint pains at the start and was originally diagnosed with Viral Arthritis. My kidney issues were quite dire and I ended up peeing blood and they shut down a short time later. Came back again after that for some reason although I was on Dialysis for a few months.

    What other tests do docs do to pin point what type of vasculitis I have?
    More blood tests and probably a kidney biopsy which is a little uncomfortable for the few minutes it takes but otherwise boring.

    how long should I expect to be on prednisone?
    Depends entirely on how you progress. Hopefully you can at least start tapering down at some point but that probably won't be until your symptoms are under control.

    any good doctors in this are you would recommend from your experience?
    I'll let someone in the US answer this one.

    Again, welcome and ask any questions at all.

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

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    Default Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    @shankxonline

    Welcome aboard!! I hope you can get great treatment leading to a full recovery. I’m 8 years in and back to a nearly normal lifestyle — making a few accommodations for being 73 yo.

    I live in Ohio and my wegs doc is at Cleveland Clinic. Here is a link to the Vasculitis Foundation’s find a doc page. https://www.vasculitisfoundation.org/find-a-doctor/ Dr Sharon Chung at USF treats some folks on here, but I know nothing else about her.

    I had lung, sinus, and ear involvement at disease onset. I’ve had just a little kidney involvement, but my first rituximab treatment took care of that.

    I’ll echo Andrew about asking questions, sharing experiences, or just venting.

    Keep us posted about how things are going!
    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: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Hi City by the Bay,
    Welcome. I once lived in Los Gatos ( many years ago). I went to Stanford for treatment of a different medical issue. After I read your post I googled them and a bit of more research may find they have the right doctor for you.
    I live in the Carolinas and go to Duke. I am a kid compared to Pete, not quite 70 yet.
    As you have seen from this site our crazy disease hits in a multitude of ways. My doctor who has been working with this for many years even treated a woman who had Wegeners of the breast.
    The trick is to jump on it with a doctor very experienced in it.
    It may take a while to find the treatment that is right for you. Just stay positive, and come here for support and help.
    Miss my sour dough bread. No one does it like the Bay Area.
    Masha

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    Default Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Thanks Masha. Will check out Stanford Immunology

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    Default Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Thanks Andrew for your reply and for starting and maintaining this excellent forum. I have a follow up with Nephrologist today and will keep you posted.

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    Default Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Thanks Pete!

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    Default Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Hi Bay Area neighbor,
    Hope you find some answers soon. If you do have Wegener's, for many of us, including me, things are the toughest at the beginning, until you get it under control. Ten years ago I had to take a leave of absence from work and couldn't even walk around the block. Now I have been back at work at my college for eight years and lead a very active lifestyle. I have been seeing Sharon Chung at UCSF for many years. She is a wonderful doctor and a vasculitis specialist with many Wegener's patients. I also have a great rheumatologist near my home in San Jose. Feel free to PM me for more information or to chat.
    TommyG

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    Default Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Welcome to the forum. You are lucky to live in the SF area. There may be several good GPA doctors in the SF area, but the one I've heard recommended most often is Sharon Chung at UCSF medical center. You will find her listed with other specialists on the Vasculitis Foundation website. I think it is also possible that you have MPA, which is closely related to GPA, and I believe also shows positive ANCA. And there may be another one in this category. A specialist would know the distinctions, but in all likelihood the treatment will be the same. Especially if kidneys are involved, you need to get a diagnosis from a specialist so you can get treated with more than just prednisone. There are various immunosuppressants that are used. Good luck and keep us posted.

    Anne

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

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    Default Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Aggressive treatment can usually save the kidneys if caught in time. And often, usually, most symptoms improve with right treatment. For most of us things are usually at their worst at the time symptoms get bad enough to result in the correct diagnosis. GPA (formerly known as Wegener's Granulomatosis) is usually diagnosed by ruling out any other possible cause of the symptoms. Be sure to include good eye care since GPA can cause loss of vision too and many other things. Much of the damage can be permanent so getting quick treatment is needed to avoid this. But treatment today is generally much better since more doctors have become aware of GPA and how to treat it but management is best done with some one with considerable experience treating it.
    Knowledge is power! Wisdom is using it to make good decisions!

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