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

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

    Annekat, I have not read all your posts but I think they are very informative, and I hope to read them and learn a lot from you. Lea

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

    Quote Originally Posted by Lea View Post
    Annekat, I have not read all your posts but I think they are very informative, and I hope to read them and learn a lot from you. Lea
    Hi, Lea, and welcome to the forum. I have been coming here since March 2011 right before I was diagnosed. My saddle nose happened suddenly around the same time that I was in the hospital overnight for tests including a lung CT scan. I'd been seeing an ENT for 2.5 years for what seemed like a never ending series of sinus and ear infections. From reading the forum and getting the saddle nose, I pretty much knew in advance what was going on, plus the CT scan showed probable lung involvement. I went in to the same ENT and got a nasal biopsy which, though they are not always reliable, was conclusive for Wegener's. Lung biopsies are more reliable but much more invasive, so I was lucky that the nasal one worked.

    Well, it gets pretty complicated, but the point of all that is that everything I have learned about this disease I have learned right here on the forum! There are those on here who know more than I do, especially about biochemical or clinical aspects. But I guess I have just soaked up a lot of information like a sponge! And you will learn a lot the same way, by reading lots of posts, and searching the archives is a great resource going back many years. There's a link for that on the main page. I know it is overwhelming, though, to try to do much research when you are still trying to wrap your head around having WG. So just take it one day at a time.

    I should have said this before, but you might want to start your own introductory thread as a new member. You might get more attention and responses that way, with your own words in the subject line. You could even have the moderator move your post or you could copy and paste it to a new location. Or just write a new post. If you need help with anything or want to ask me anything, feel free to send me a private message. There's a link for that, too, or you can do it by clicking on a member's avatar. I've forgotten a lot of how the forum looks on a computer, but I can always go there. I know I didn't answer all your questions, so just keep plugging away at it. Best of luck!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 10-07-2019 at 06:10 PM.
    Anne, dx'ed April 2011

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

    Hi Lea,
    Welcome to our forum. You will learn a great deal here and find plenty of support.
    Anne is right. If you move this up to New Member, you will get a lot more responses.
    Your question of what to expect has one very solid answer-expect the unexpected. This disease comes in so many forms, with different medical treatments depending on the patient and doctor.
    Having a top notch doctor, experienced with Wegeners is key. Unfortunately, some people donít live near one, nor do they have the ability to get to one.
    I go to Duke, others have great luck with CC. More good ones across the country.
    By having a variety of blood tests and yes urine tests, your doctor should be able to determine where you are and what course of action should be taken.
    I was diagnosed over a year before I found this site. I was just plain too frightened to read about what I had, stuck my head in the sand.
    After changing doctors and going to Duke, I feel I am on the right path. RTX infusions have been great for me, I take bactrim three times a week, and yes I am on the dreaded prednisone. That is an up and down thing.
    For the sinus problem, I got a Sinu Pulse machine (Amazon) I also use Flonase and for the leg and feet pain I take nightly Epi Soak baths.
    My C-anca always comes back positive, but that is not the only thing to consider. Most of the time I feel pretty good. I am retired and have had to make some lifestyle changes.
    Early on I had tooth involvement, so itís like I said expect the unexpected.
    Tell us what your new doctor says and what the next steps will be.
    I hope you have a pretty fair sick leave. Teachers need to be taken care of too. Spanish was my HS language. I just took enough to get into college. Unfortunately, I didnít retain it. I am trying to be lite and add a little levity to the situation. Stress is a trigger for our disease. So try to stay calm, let the doctors do their work, you do yours and the Power to be will take care of the rest.
    Masha

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

    Annekat- Our symptoms are so similar to each other, ugh, I hate this disease! But you are right, we are much better off than some. I am down to 7.5mg Prednisone, my voice is hoarse a lot of the time, sinus issues, constant cough, even my heels hurt lol. Positive GPA from nasal biopsy, mass (in lung) with needle biopsy confirmed GPA. I still have double vision in rt peripheral field, they still don't know if that will return to normal. Another Retuximab round in December. Sherry

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

    Quote Originally Posted by sshiveley View Post
    Annekat- Our symptoms are so similar to each other, ugh, I hate this disease! But you are right, we are much better off than some. I am down to 7.5mg Prednisone, my voice is hoarse a lot of the time, sinus issues, constant cough, even my heels hurt lol. Positive GPA from nasal biopsy, mass (in lung) with needle biopsy confirmed GPA. I still have double vision in rt peripheral field, they still don't know if that will return to normal. Another Retuximab round in December. Sherry
    Sherry, for me it took 2 rounds of rtx (6 months between) and 9 months since I started it, in order to see a real difference.
    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

    Quote Originally Posted by sshiveley View Post
    Annekat- Our symptoms are so similar to each other, ugh, I hate this disease! But you are right, we are much better off than some. I am down to 7.5mg Prednisone, my voice is hoarse a lot of the time, sinus issues, constant cough, even my heels hurt lol. Positive GPA from nasal biopsy, mass (in lung) with needle biopsy confirmed GPA. I still have double vision in rt peripheral field, they still don't know if that will return to normal. Another Retuximab round in December. Sherry
    Hi, Sherry,
    Actually my symptoms are really much better now, since I started treatment in 2011. That doesn't mean it will take you that long, since you had a fairly quick diagnosis and I was living with symptoms for 2.5 years before dx, which gave more time for permanent damage to occur, hence the saddle nose, hearing loss, reduced lung function, etc. Although I had a fairly inexperienced doctor for WG, he was good enough to get me started on the best treatment available to me at the time. I did have a great deal of improvement in the first year, and after that, it took a few years longer to get to where I am now. It sort of leveled out for awhile. I do remember the hoarse voice and still get that sometimes, while most days I sound just fine. Allergies and stress do affect me. I do have double vision but in both eyes together, not just one, so it is different than yours, and if I close one eye, the other sees perfectly. It is thought by ENT and opthalmologist to be caused by sinus erosion under one eyeball so that the eyes can't work well together. Not to go on and on about me, but you are doing very well to be down to 7.5mg of pred after such a short time, while I just recently tapered from 7.5 to 5mg. I'm a little concerned that this could be too low too soon for you, causing some of your continued pains and other issues, but on the other hand, those things are pretty common this early on, and tapering pred quickly is a good goal. I'm still impressed at the low number, as long as you aren't having a full blown flare, which it doesn't sound like. So keep hanging in there with the RTX and you can always increase pred later if necessary. Keep us posted on how it goes.
    Anne

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

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

    Quote Originally Posted by sshiveley View Post
    Annekat- Our symptoms are so similar to each other, ugh, I hate this disease! But you are right, we are much better off than some. I am down to 7.5mg Prednisone, my voice is hoarse a lot of the time, sinus issues, constant cough, even my heels hurt lol. Positive GPA from nasal biopsy, mass (in lung) with needle biopsy confirmed GPA. I still have double vision in rt peripheral field, they still don't know if that will return to normal. Another Retuximab round in December. Sherry
    Early in this disease, before it was diagnosed properly, I was having double vision. At one point , my right eye swoll up. The doctors were then treating my symptoms. Lots of Prednisone brought my eyes under control but caused premature cataracts. Once I was diagnosed with wegs and we started on the Rituxin protocol, things started getting better. I've been on it for about 2 1/2 years now with infusions every 6 months. Things are SOOOOOOOOO much better now.

    Like the cat poster says "Hang in there".

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

    Hello All - didn't get a chance to come back to this wonderful family with update. 1025/19 - got my kidney stones removed, things went back to normal on blood tests (CRP, ESR etc) and MRI scans came back normal too. Dropped Prednisone to 20mg but then the sinus and eye pressure/redness came back within a week. Clearly indicating a systemic thing going on within my body for GPA. At least - that I know now. Back to 40mg prednisone and getting on Methotrexrate next week or so. Hopefully I find the right balance between Prednisone and Metho. Rheumatologists specializing in vasculitis seem very rare in SF bay area 2 known ones are not accepting new patients and that's a bummer. But my Rheu is very responsive and seems to have a good handle on treatment. Praying and hoping it all works out and doesn't cause more flare else where in my body. The unknown path sucks - but at least i know I have it and need to pay attention to it.

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

    Glad you're on a good path now. Kinda surprised there aren't more vasculitis docs around Bay area. I'm at Mayo/PHX and they started me on the pred/MTX path. Took almost 2 years to wean the pred and 4 to get off MTX. Didn't have many side effects. Was off all drugs for about 5 years and after a long flare am now on RTX. Seems to be working...best to you and keep at it!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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

    I take 1 step forward 2 steps back. When I had written that I was down to 7.5 mg of Prednisone, yet another flare up, I was weaning slower this time. Rt eye is beginning to protrude again, Double vision peripherally isn't going to get any better. Rheum bumped me up to 20 mg Prednisone and possibly getting Retuximab sooner. Sherry

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