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Thread: PR3 Antibodies Elevated

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    Default PR3 Antibodies Elevated

    Hi Everyone!
    Hoping one of you might be able to shed some light...
    I haven't been feeling well for about 5 weeks...pain that comes & goes. (this week no pain at all!)
    I had been to a walk-in clinic and then also saw my primary and everyone said I was fine.
    Made an appointment with my Rheum doctor and convinced him to run a full set of labs.
    He mailed me a letter that said all my labs came back normal...but then called me today and left me a voicemail stating "not to panic" but that my PR3 Antibodies were elevated and that it could be a sign that my disease was active but that we would just wait and see how I do. (I went totally off pred in June for the first time/no meds at all). He's away until Monday or Tuesday...so no answers until then.
    If I haven't been feeling well...and a test confirmed my suspicion that wegs could be acting up...why would I wait any longer?
    Am I waiting for damage to be done to my organs so it can be confirmed?
    Trust me I don't want to go back on Pred...but I also don't want to go completely deaf (lost hearing in right ear completely due to wegs).
    If I were the doctor I'd have them do a CT scan on my lungs, as my ears and my lungs is one of the first places the disease presented.
    Am I over-reacting?
    Thoughts?
    Thanks everyone!

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    Default Re: PR3 Antibodies Elevated

    If you are having any symptoms besides anxiety I would go to a walk in or urgent care facility for more tests. One can lose kidney function in days and not be aware of any problems till the damage is done. Do you have test strips to check for blood in your urine? Almost any facility can do urine analysis to assess kidney function. Like wise any medical provider can listen to your lungs to see if they hear indications of some unhealthy or unusual sounds indicating some pathology.

    I agree it is important to try preserve your hearing, vision, kidneys and lungs. My hearing loss was also quite sudden with no warning and I had to wait a couple years to get a BAHA surgery to restore some hearing. I also lost half my kidney and lung function but my vision damage was minimal since diabetes had already impacted that and increased the GPA damage which took me many months to attain some degree of remission and recovery enough to live outside of a nursing home. in an assisted living facility. And such an ordeal is some thing you definitely want to avoid if possible. Taking GPA maintenance meds and prednisone is a small price to avoid this scenario so don't over react to the fear of resuming such meds. And remember that most people do relapse within two years after going off their maintenance meds but a large number learn they can get by without any such meds often for many years so it is worth trying if your case is not too severe. My treating doctors did not think this was viable option for me so I have remained on maintenance meds since my diagnosis in 2010. Many people with organ transplants take similar meds the rest of their life.

    Unfortunately the ANCA tests don't always correlate with GPA symptoms or activity. Mine used to but no longer do. Some people have had many symptoms with negative scores and some have the reverse. So having increased scores does not mean you have active GPA but for your peace of mind you want to get this confirmed as much as possible.
    Last edited by drz; 09-06-2019 at 03:19 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: PR3 Antibodies Elevated

    I guess if it was me and I'd been totally off meds for only two months, I'd be a little concerned about a possible flare up. But the things you mentioned, ears and lungs, I would think would be causing symptoms that would take some time to escalate. If your pain was joint pain, I'd be more concerned since that is a common place for flare ups to start. In that case, if you have any prednisone sitting around, you could take a moderately low amount until you see your doc, and see if the pain went away. Ditto for night sweats or even slight fevers. You didn't mention kidneys, but what drz said I'm sure is true; they are the one thing I've really heard can escalate without symptoms. And people can have new involvements with flares, such as kidneys, which they never had before. So I think it's a good idea for all of us to have those test strips drz mentioned, although I don't. All that being said, if it were me and I thought I could talk to my doc on Monday or Tuesday, I probably wouldn't get too worried unless I started feeling unwell again. Best wishes.

    Anne

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

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    Default Re: PR3 Antibodies Elevated

    In my case elavated PR3 is deffinitely an indicator for a flare coming. I wouldn't wait too long. Ask for treatment. If you are on rtx it takes time to start working anyway.
    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: PR3 Antibodies Elevated

    Hi Beautiful People!
    I've been meaning to pop in and post an update!
    Flashback to September...my Doctor told me they would continue to do my blood work every few months and watch my PR3 antibodies and "to have a very low threshold for any symptoms". During December I had a couple incidents of random joint pain that would only last a day or two then disappear. Then at the beginning of January I caught a cold, then got a low grade fever for a couple of days. I coughed up the tiniest amount of blood a few times....but when I first got sick 3 years ago, the same thing happened...so I called my doctor. Got an x-ray...didn't look good. Got a CT scan that confirmed I had another hole in my lung (like last time)..and disease was active...and they found a small amount of blood in my urine, though Kidney function is normal. Doctor put me on 60mg of pred while I waited for Rituxan infusion. A week later increased it to 80mg of pred because I was getting concerned with my left ear (my only good ear) feeling "full". I finally have the Rituxan infusion scheduled for this coming Friday...took about 4 weeks to get it scheduled due to an insurance issue. Thank the Lord all was approved and worked out! Because it was caught early, my doctor is hoping I won't have to be on Pred too long...only a few months. And then I assume I'll go back on Azathioprine. When I came off Azathioprine last June...it was only 3 months before I started experiencing symptoms. Has anyone tried to come off all meds the first time and flared, but tried a second time and succeeded? I don't want to risk my body's health by attempting again...but I also don't want to give up the hope of ever coming off meds. GRATEFUL for the meds...but just want to consider all the options!!

    Thanks everyone!

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