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Thread: Ongoing Sinus Issues

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    Default Ongoing Sinus Issues

    Greetings--

    Hope everybody here is doing well. I first posted here back in December of 2019 after testing positive for C-ANCA/PR-3. At the time, my symptoms weren't screaming GPA and I didn't end up with a diagnosis (I do have Autoimmune Hepatitis and some inflammatory arthritis for which I take Imuran and Plaquenil).

    Last summer, I started experiencing occasional intermittent pain in both ears and my sinuses, congestion, post nasal drip, voice hoarseness (over the past few months). I've also been experiencing tinnitus on and off for about a year. I took OTC sinus meds a few months back, which did little. I started taking another round today.

    Around the same time last summer, I started experiencing inflammation/pain in both knees (prior to this, arthritis pain was mostly hands and feet, though, at this time was mostly under control). I also had a minor flair of what appeared to be leukocytoclastic vasculitis on my lower limbs, which came and went in a couple weeks.

    Theoretically, if I do have Wegener's, I'm already kind of treating it with the Imuran and Plaquenil which will make a diagnosis very difficult. The thing that's weird to me is that these sinus issues been "smoldering" for so long, as if the cause is mostly under control but not completely.

    Based on all of the experience here, does this sound at all like it might be GPA related? Do any of you have "smoldering" sinus issues like this even with treatment? Has my other AI issues and ANCA positivity turned me into a hypochondriac?

    Thanks for taking the time! Appreciate any guidence!
    Last edited by robertlevigarrett; 03-18-2021 at 12:51 AM.

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    Default Re: Ongoing Sinus Issues

    Boy , Wegener's is tough to figure out even when it's the only thing going on. I can appreciate your complications making it even harder.
    Were you ever able to be seen in Cleveland? Did you get a sinus biopsy to help narrow things down? Biopsy is a gold standard for Wegener's diagnosis.

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    Default Re: Ongoing Sinus Issues

    Yeah, I had an appointment with Dr. Villa Forte (who's awesome!), but I wasn't having any sinus issues at the time and nothing else was clinically indicating of Wegener's, so the road kind of ended there "at least, for now". She's the one who told me that my other AI issues and current medication will make it extra difficult to diagnose. My regular rheum says the same thing.

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    Default Re: Ongoing Sinus Issues

    Hi Robert,

    I hope you live reasonably close to Cleveland so that you can see Dr Alex on short notice if the nasal symptoms become more active. I call rheumys the doctors of mystery diseases. I think she’ll get to the bottom of things eventually.
    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: Ongoing Sinus Issues

    Well, you are in very, very good hands with Dr Villa Forte and at the top facility. I actually talked with her once at the airport after a Wegener's symposium she spoke at. I kinda felt guilty talking more 'shop' with her under those circumstances but she was nothing but kind and generous with her time. Probably not a big deal at the time for her but it certainly was for me.
    I would feel confident under your circumstances that you are on the best path possible. Many times we have to call that 'good' with this illness. ]

    To answer one of your questions better about 'smoldering sinus issues even with treatment'. That is very common with Wegener's . I myself was told to expect this 40 years ago when my adventure began- and it has been proven to be true. Another thing that can complicate figuring out what the problem is is that , for me, because of structural damage I'm now prone to sinus infections. Hey, even normal people get sinus infections. Then challange is to figure out is the WG or is it infection. In my case it has often been both.

    One way I deal with it its to first treat it like infection and step up my sinus maintenance with frequent and timely washing. Sometimes I do it four times a day- using a wide variety of potions for the rinse. One thing I lastly rinse with is Levofloxin antibiotic to help kill the bugs. I think it really helps. The primary thing that helps though is to keep them meticulously clean of gunk. Gunk is the breeding ground. Another potion that I think helps tremendously and is supposed to be mildly antibiotic is Alkalol sinus rinse. It is labeled a 'mucous solvent' and I believe it actually is. It really helps. Amazon has a better price on it then anywhere else I found. I mention that because I use it a lot and have to think about price more than the average person might.
    You didn't mention if you got a nasal biopsy or not. Is it because you weren't having sinus issues at the time and WG will only show up on biopsy with active involvement? I'd be curious to know.

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    Default Re: Ongoing Sinus Issues

    The ANCA test was ordered by my neuro as part of a huge round of labs to rule out a bunch of stuff. When it came back positive, he told me I needed to follow up with my rheum to figure it out. I have a rheum at the University of Cincinnati, who's great, but I jumped at the chance to see Dr. Villa Forte. If GPA was or was not on the table, I wanted to hear it from her. I wasn't having (nor did I have a history of) sinus issues at the time, so I guess she didn't think biopsy was necessary. She told me, based on my presentation, that GPA wasn't a concern at that time. I don't know for sure, but I would think that the sinuses would need to be actively involved to show up on a biopsy.

    Thanks for the treatment suggestions! I will look into these!
    Last edited by robertlevigarrett; 03-18-2021 at 10:42 AM.

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    Default Re: Ongoing Sinus Issues

    Even with the very best doc another opinion can be helpful sometimes. I think you are on track to eventually get this figured out and get the right treatment to put you back in good shape. You are really doing YOUR part to be diligent, pay attention and taking action. I talked a bit long about the sinus stuff because at times I've realized that I wasn't doing as much as I COULD to take care of them myself and I eventually realized how important it was for ME to get some good potions for them and be very meticulous about keeping them clean. It really helps me given the sad shape they are in. Often it's the difference between feeling not good at all and being pretty much ok. I like pretty much ok a lot so I'm willing to work a bit harder for it.
    Last edited by me2; 03-18-2021 at 05:12 PM.

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    Default Re: Ongoing Sinus Issues

    I choose to see Dr. Villa Forte. She is an expert on GPA and on diseases that mimic GPA. I had several tentative diagnosis of different diseases before I saw her. I was told that possibly I had Lyme Disease, maybe GPA and a few others. My symptoms were not textbook. I had the eye issues, sinus issues and I had a number of sores on my fingers that looked like warts. I had tested negative on the ANSA test.
    A biopsy was taken from my hands and another from my sinuses. They were inconclusive. Dr. Villa Forte had the biopsies re-analyzed and reviewed all of my medical records. Over 400 pages of notes, scans and tests etc.
    After she reviewed all of the data, she concluded that GPA was the correct diagnosis and prescribed treatment. My hand issue cleared up almost immediately. My eyes gradually regained the ability to be in sunlight. The sinuses have stayed clear.
    She is the best.
    As soon as it is safe for me to travel again, I want to go see her.

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    Default Re: Ongoing Sinus Issues

    John yours is quite the story. Thanks for telling us about it and congratulations on finding your path to improved health.

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    Default Re: Ongoing Sinus Issues

    I was told that my residual symptoms of GPA will fluctuate from time to time. But they could also evolve or change into something new that I had not experienced before. Initially my most typical signs of an increasing problem with my GPA was to have joint pains and nosebleeds. After a few years inflammation of my eyelids also became a frequent occurrence. Then I also experience joint pain in my jaw which led me to several trips to the dentist thinking I had a dental problem which was ruled out. Another clue that it was GPA related was when it would quickly jump from one location to another just like my joint pain used to do before I was diagnosed.

    I was told that sinus problems were likely to be a permanent feature in my GPA and I needed to do sinus rinses daily or more often if the sinus problems were increasing or becoming more persistent. My doctors told me that damage to the sinuses is one of the most common results of GPA. Damage to the kidneys or lungs is much more serious and life-threatening but does not occur as frequently. Serious eye problems that can result in blindness are also fortunately not as frequent. Another one that is not quite as frequent is deafness caused by damage to the auditory nerves. This can also go along with damage to the vestibular system which impairs one's balance. Exacerbation of neuropathy can also occur frequently with GPA. Other complications frequently result as a side effect of the treatment for GPA because once the immune system is suppressed by the medicine we take for treatment, problems like skin disorders and mouth sores frequently occur.

    I have experienced all of the issues listed above as the wicked granny hit me very hard. Some of the issues appear to come and go while others are the result of permanent damage to various body organs. Some damage improved with treatment while others that are progressive get worse.

    I was told at the beginning of my treatment 11 years ago that it was important for me to learn how the GPA most typically will impact my body so that I can recognize any increased symptoms or new symptoms that might be a sign of a flare which could require a significant change in my maintenance meds. The main concern was a sneaky flare that might attack my kidneys again and wipe them out to the point I would need dialysis and/or a transplant. A serious attack in the eyes could also cause blindness or a possible total loss of hearing in the one hearing mechanism that still partially works for me. Although most of those issues will probably be mild fluctuations in the residual symptoms that can be handled with a small increase in prednisone meds and/or in my AZA maintenance meds. My doctors consider a serious flare as one that would require me to go back on Rituxan.

    As the previous posts above indicate we are the ones who are going to be most motivated and in the best position to ascertain if we are having a problem that requires some medical intervention. It also helps to have a good treatment team with considerable experience in treating GPA to help us learn and recognize what might be going on when we are experiencing various symptoms. Someone who has seen hundreds of cases will be in a much better position to recognize what is happening and what medical intervention, if any, is required or appropriate.

    A less experienced physician may very well ask you for your impression of what is going on and what treatment might be appropriate. This is a bit daunting when you are recently diagnosed but it's a good sign when a physician recognizes the limits of their experience and expertise and ask you who they could consult with to determine the best course of action for you. I had a lot of respect for those ER physicians who told me this when I was at the beginning years of my GPA treatment.
    Last edited by drz; 03-20-2021 at 04:22 AM.
    Knowledge is power! Wisdom is using it to make good decisions!

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