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Thread: shankxonline - My path to identify GPA and overcome it

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    Post shankxonline - My path to identify GPA and overcome it

    I am going through a lot of blood tests, urinalysis, CT scans, MRIs ... just to get to know if its GPA, which organs are affected and then get away from current Prednisone to a non-steroid immunosuppressant med.

    Time period: Last 2 months

    Symptoms:
    • A lot of joints and muscles ache. Mostly in bottom of both feet, elbows and back of the hands
    • Pressure in the top of eye, red eyes
    • Slight pain on the front of nose (sinus)


    Whats known:
    • Kidney functions are normal
    • Lungs are clear from CT scans taken
    • No pain or inflammation in the throat area


    Whats still unknown:
    • Nasal, Eyes and head MRI scans


    Keeping me awake:
    • What part of my body starts paining tomorrow?
    • When can I get over Prednisone and to a known med which will balance my immune system
    • Do I need to go to GPA specialist or continue with Rheumatologist I have


    Share your thoughts in this thread. I have gotten great response in the new patients thread - but here I will keep posting my path ahead as I go through the experience.

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    Default Re: shankxonline - My path to identify GPA and overcome it

    The first thing that jumped out at me was regarding your desire to discontinue prednisone when you start one of the standard immunosuppressant meds, that is IF you are found to have GPA or a similar, but less common Vasculitis, such as MPA. It is generally accepted that people stay on prednisone when started on an immunosuppressant med. It would be very unusual not to use both together, or start them both at the same time, even if you are already taking pred. They each perform somewhat different functions and they work together. If your current rhematologist says otherwise, it may mean you need a more experienced specialist. I'm not sure if you are the one in the SF Bay area, but it should be a lot easier to find a good specialist there than in most places.

    The other thing I noticed was a biopsy wasn't mentioned, unless I missed it. It's great that you don't apparently have lung or kidney involvement! But those can crop up later without proper treatment. If you have nasal involvement, a biopsy can be done there, or a specialist would know where else based on your symptoms. Nasal biopsies are known to give false negatives fairly often, but if that is the place that makes the most sense according to your symptoms, then it's worth a try, and in my case it provided a positive result, which was considered conclusive. It can be done on an outpatient basis, and in my case was done on the spot in my ENT's examination room. If you don't have an ENT, you should, as they are better able to see what is going on in your nasal area than most rheumatologists, and would be the one to do the biopsy. Your rheumatologist should know all this.

    With the nasal, eye, and joints involvement, and a positive ANCA if I remember right, it does sound like GPA or another Vasculitis. If you had a positive c-ANCA, it would usually indicate GPA, and if it was positive p-ANCA, it would usually mean MPA. What little eye and joints involvement I had disappeared quickly with treatment, but my lung and nasal/sinus/ear involvement took considerably longer. I was on immunosuppressants and prednisone the whole time, and am still on a maintenance med and low dose of pred, after 9 years. Yet I am in better shape than many. At 2 months, you will be lucky to have gotten an early diagnosis, if you get one. Mine came 2.5 years after start of symptoms. An early dx means better chance of quicker remission and less damage to one's tissues and organs.

    I might sound like I know a lot, but it is only info I've soaked up in 9 years of being on this forum and reading lots of case histories as described by patients. And it can be corrected if necessary. Everyone's case is at least a little different and sometimes a lot. Sorry I went on so long. Best of luck and success at getting this figured out and taken care of!

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    Last edited by annekat; 09-05-2019 at 08:05 AM.
    Anne, dx'ed April 2011

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    Default Re: shankxonline - My path to identify GPA and overcome it

    Now looking at your original post, where there was some kidney stuff going on, and here, where you say kidney function was found normal. If there is any doubt about WG being in your kidneys, a biopsy there would be the way to go, I think. But your nephrologist would be the one to know that and anything else regarding the kidneys.

    Anne

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    Anne, dx'ed April 2011

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    Default Re: shankxonline - My path to identify GPA and overcome it

    Quote Originally Posted by annekat View Post
    Now looking at your original post, where there was some kidney stuff going on, and here, where you say kidney function was found normal. If there is any doubt about WG being in your kidneys, a biopsy there would be the way to go, I think. But your nephrologist would be the one to know that and anything else regarding the kidneys.

    Anne

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    Hi Anne - they have concluded that my kidney issue is different from the (possible) GPA issue which seem to have suddenly shown up at the same time. I am having surgery to get kidney stone out from my kidney soon.

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    Default Re: shankxonline - My path to identify GPA and overcome it

    Quote Originally Posted by annekat View Post
    The first thing that jumped out at me was regarding your desire to discontinue prednisone when you start one of the standard immunosuppressant meds, that is IF you are found to have GPA or a similar, but less common Vasculitis, such as MPA. It is generally accepted that people stay on prednisone when started on an immunosuppressant med. It would be very unusual not to use both together, or start them both at the same time, even if you are already taking pred. They each perform somewhat different functions and they work together. If your current rhematologist says otherwise, it may mean you need a more experienced specialist. I'm not sure if you are the one in the SF Bay area, but it should be a lot easier to find a good specialist there than in most places.
    My Rheu is still figuring it out. Its just me not wanting to continue on Prednisone (or any steroid) for long period if possible. I don't know what long means. Right now at 40mg per day.


    Quote Originally Posted by annekat View Post
    The other thing I noticed was a biopsy wasn't mentioned, unless I missed it. It's great that you don't apparently have lung or kidney involvement! But those can crop up later without proper treatment. If you have nasal involvement, a biopsy can be done there, or a specialist would know where else based on your symptoms. Nasal biopsies are known to give false negatives fairly often, but if that is the place that makes the most sense according to your symptoms, then it's worth a try, and in my case it provided a positive result, which was considered conclusive. It can be done on an outpatient basis, and in my case was done on the spot in my ENT's examination room. If you don't have an ENT, you should, as they are better able to see what is going on in your nasal area than most rheumatologists, and would be the one to do the biopsy. Your rheumatologist should know all this.
    Her plan seems until she sees an organ where its likely to have affected she would go for biopsy. Lungs and kidney tests have come out normal and I was directed to specialists in those fields who said biopsy is not needed. Eye/Nasal reports to be seen.
    Joint pains and muscle dont seem to give them enough evidence to do any biopsy it seems.


    Quote Originally Posted by annekat View Post
    With the nasal, eye, and joints involvement, and a positive ANCA if I remember right, it does sound like GPA or another Vasculitis. If you had a positive c-ANCA, it would usually indicate GPA, and if it was positive p-ANCA, it would usually mean MPA. What little eye and joints involvement I had disappeared quickly with treatment, but my lung and nasal/sinus/ear involvement took considerably longer. I was on immunosuppressants and prednisone the whole time, and am still on a maintenance med and low dose of pred, after 9 years. Yet I am in better shape than many. At 2 months, you will be lucky to have gotten an early diagnosis, if you get one. Mine came 2.5 years after start of symptoms. An early dx means better chance of quicker remission and less damage to one's tissues and organs.
    Keeping my fingers crossed and all the inputs from this forum helps a lot.

    Quote Originally Posted by annekat View Post
    I might sound like I know a lot, but it is only info I've soaked up in 9 years of being on this forum and reading lots of case histories as described by patients. And it can be corrected if necessary. Everyone's case is at least a little different and sometimes a lot. Sorry I went on so long. Best of luck and success at getting this figured out and taken care of!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    It
    Thank you for your detailed post and I need all the inputs I can get until I know what I have and where it takes me! So - THANK YOU!

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    Default Re: shankxonline - My path to identify GPA and overcome it

    Yes, 40mg is kind of a lot of pred to be on for two months. Everyone handles it differently, some can't tolerate it and some actually like it! Or the improvement it makes for them, like when I was getting short tapers of it for what was thought to be allergies and sinus infections, which turned out to be GPA. It always made a huge difference and even my voice cleared up. Anyway, if you are found to have GPA, once they start the immunosuppressant, they will likely start tapering the pred down as your symptoms improve, to levels where you can live with it better. It's dangerous to stop it all at once when at that dose for that long.

    True, joint pain doesn't provide much to biopsy, and eyes would be difficult and maybe risky. I have heard of people with bleeding gums getting a dx from tissue there. But a real GPA specialist can often proceed with a dx based on symptoms and response to meds, when a biopsy is impossible or inconclusive. And I'm not trying to put down your rheumy when he or she may be competent and obviously knows where to turn to cover all angles. And more experienced GPA docs may be available for consultation, even for free, by any docs needing help or confirmation about handling of a case. The Vasculitis Foundation site has had info on that, though I haven't looked for some time.

    I hope to see some more responses to your post. It's always good to hear different points of view. Good luck!!!

    Anne

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    Last edited by annekat; 09-05-2019 at 12:27 PM.
    Anne, dx'ed April 2011

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    Default Re: shankxonline - My path to identify GPA and overcome it

    I remember being diagnosed with plantar fascitis from pain in my feet years before I was finally and correctly diagnosed with Wegener's. The treatment for the plantars of course did little or nothing to help the pain. And all the foot pain went away after treating the Wegener's.

    The treatment for scleritis did help those symptoms. The treatment for nose bleeds and crusting made things worse until I was treated for Wegener's. I had various GPA symptoms for two or three years before getting the right diagnosis and treatment but then things were really bad with lot of permanent damage. It is good to hear your lungs, hearing vision and kidneys still seem OK since those are the most likely areas for permanent damage in your body. I lost my balance too but that is not very common. They did save my vision from any significant damage from the GPA but my diabetes has also impaired that.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: shankxonline - My path to identify GPA and overcome it

    Welcome to the forum. Please remember that being on 40mg pred for 2 months already - should change the symptoms and the tests' results. While trying to figure out your diagnosis the dr needs to check what were your symptoms and labs BEFORE you have started the pred. Wg expert will know.

    As far as I know positive C-anca is an indication for WG or for Crohn's disease.
    Last edited by Alysia; 09-07-2019 at 03:27 AM.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Default Re: shankxonline - My path to identify GPA and overcome it

    Update 9/10/19: Had my kidney stones removed surgically - so one of the parameters is gone. Planned MRI of head and orbits planned followed by more tests I assume. Not knowing if its GPA and where all will it affects is still killing me.
    Prod is ON and I feel good so far. Some joint pains continue and little eye pressure (with redness) persists through the day.

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    Default Re: shankxonline - My path to identify GPA and overcome it

    I just registered as a member to this forum. I have spent this week trying to learn everything about this Wegeners condition. I read your thread with interest because it includes two people, one with experience on this condition and one who has not had this condition for a long time, and I want to know and learn about your path, and what you have done. I was just diagnosed with Wegener last week. It started in May, what my doctors thought it was just a sinus problem, and I got antibiotics, and nose sprays, and 5 days steroid/anti -inflammatory pills. Three or four times I went to different doctors and all gave me the same. Finally I requested to be referred to an ent doctor. This doctor gave me antibiotic and steroids for 14 days, but nothing happened. I had a CT Scan (I don't know why he could not detect anything) so he thought it was a "normal" sinus problem and he scheduled surgery for chronic sinusitis. During surgery he found that the problems was not sinus but granulomas, so he did non proceed with surgery. They made a biopsy of the granulomas and found they were not cancerous. Tuesday 10-8-19, I will go and she a specialist on this and I will find out where i am. My ears got clogged and they got to a point where I could not hear anything, and my septum has collapsed some. My ENT doctor referred me to the second specialist that I am going to see on Tuesday, but put me on steroids and I have started taking the steroids before I see the second doctor. My ears have clear some, and I can hear a person 4 to 5 feet away from me, but what worries me know is the rest of my body, lungs, kidneys, and everything else. How do I know what has been affected so far? I also started having pain on the bottom of my feet. Everything now feels OK maybe because I am taking the steroids. My septum worries me because it has collapsed some and I can see the saddle chair a little bit. I would like you to give me any advice on what's next. What is going to happen when I see this second doctor and what is normally done, and how should I be ready for this? I will appreciate any advice you can give me. Thank you very much. I am 57 years old, female, and I am a high school teacher (Teach Spanish). I have stopped working since September 15 and I am also concerned about my job. I guess everything depends on what this second doctor says.
    Last edited by Lea; 10-07-2019 at 03:34 PM.

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