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Thread: Maybe WG, have questions

  1. #11
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    Hi Nathaniel. Nasal biopsy is a tricky call. My doctors didn't even consider it because of damage already caused to sinus cavity plus the fact that it has a high rate of false negatives. If you are on rtx though I don't know if they will find another area of inflammation to test. My diagnosis involved a needle biopsy of my lung with infected tissue. As for the prednisone horse you may already be on it and not realize it. I was not aware my rtx infusion had methylprednisolone, which while technically different is very similar and almost the same thing, as part of the infusion. Getting on a high dose is always no fun. But many have gone with a low dose prednisone for managing symptoms after they are under control. Not ideal but if your doctor suggests it I would give it serious consideration. Only other advise I really have for you is keep looking and pushing for a diagnosis. It sounds like they are treating you for WG but kind of touch and go. If it is Wg it will allow your doctor to be a bit more aggressive knowing this. And if it ends up being something else your treatment options may vary from alittle to ALOT and go a long way to making you feel better.

  2. #12
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    Fix please.
    Phil Berggren, dx 2003

  3. #13
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    Hi, Nathaniel. Welcome to the forum.

    I have a lot of eye issues with my stuff. For a while, when my dry eye syndrome was first diagnosed (a couple of months ago), the eye doc put me on prednisone drops. They helped, but then I had to find something for after it, since it wasn't going to go away. I use Systane Balance, but I also use the Systane Overnight Therapy gel. I put it in right before I turn out the lights. Personally, I've found this helps a LOT. It's a thick gel and since I'm sleeping, it stays put. But I use Systane Balance drops throughout the day. Hopefully, you'll be able to figure out everything that's going on, and get better soon!
    "You don't have a soul. You are a soul. You have a body." C.S. Lewis

    http://www.sensinganenemy.com

  4. #14
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    Quote Originally Posted by godgirl View Post
    I use Systane Balance, but I also use the Systane Overnight Therapy gel. I put it in right before I turn out the lights. Personally, I've found this helps a LOT. It's a thick gel and since I'm sleeping, it stays put. But I use Systane Balance drops throughout the day.
    I happened to buy Systane Balance today. Works much better than the Systane Ultra. I'll look for the Overnight formula, as I also wake up very dry.

  5. #15
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    I agree with you. The Systane Ultra didn't work as well. The Balance was much better.

    Also, if there's any pain with your eyes, get to the eye doc. Scleritis, uveitis, etc can be part of a flare. And without treatment (prednisone-ugh), you can damage your sight.
    "You don't have a soul. You are a soul. You have a body." C.S. Lewis

    http://www.sensinganenemy.com

  6. #16
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    Welcome, Nathaniel. Just wanted to say my nasal biopsy was no big deal and it provided a positive diagnosis. I already had a saddle nose at that point, so there was already some damage, plus the nose made the dx pretty obvious. But the process was not overly unpleasant, there was a numbing agent given, and it was done right in the ENT's regular examining chair, on the spot, as soon as I went in and showed him my saddle nose. There was some bleeding during the process, but in my case I think he was mainly taking scrapings from the hole in the bony part of my septum, which I guess could be less invasive than cutting into inflamed tissue. In any case, if a positive biopsy was able to be obtained, things would be more clear and you could proceed from there. RTX sounds great, but I agree that some high dose pred would help a lot. I don't know how much was in your RTX dose, but you might need to continue it; people I know who use RTX haven't stopped the pred. I know some of us hate it more than others and am truly sorry if you have a big problem with it. I wonder if it is possible you could get used to it. In any case, I too have heard great things about Dr. Speira, and it would be interesting to know whether he thinks you should get a biopsy and what he thinks about the pred. I apologize if I'm missing some of what you said here without going back to the first page.
    Anne, dx'ed April 2011

  7. #17
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    Well Annekat right now I am slotted to be pred free again once I step down. Remember I am switching from Cytoxan pred free to a rtx treatment had to get on the pred again to manage symptoms for the switch but who knows. I am hoping to stay off of it ... but my advice to Nathaniel is as much advice to myself in case when all is said and done the doc says you may need to stay on it. Sort of hoping for the best preparing for the worst. But if you have faith in your doctor and trust your doctor then you should never dismiss what he says lightly. If you don't then find a new doctor.

  8. #18
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    Chris, I sure hope you are able to get pred free! Some are able to and some aren't, and true about finding a doc you trust so you can follow his suggestions with no worries. I don't have the best doc but he seems to able to work with me on the pred, trusting my judgement if I need to go slower than he suggests. So far I haven't been able to get below 7.5mg without flaring. I'm on 15mg. MTX and wonder if upping that just a bit might help me need less pred. It certainly is a balancing act. I do think I need a doc who is more experienced with WG. There is no one quite as well thought of as Nathaniel's Dr. Speira in my area, but I hear there are some competent vasculitis docs within 70 miles or so of my home.

    And I do appreciate clarification of your situation with having to start pred again after starting RTX. I, too was on Cytoxan, but then switched to MTX and have never been off pred that whole time. RTX could be in my future, but I won't rush into it unless I become quite a bit sicker than I am now.
    Last edited by annekat; 06-30-2014 at 04:02 PM.
    Anne, dx'ed April 2011

  9. #19
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    My old doctor, <old because he suggested I go else where not because I didn't trust him, as he put it he was not ashamed of anything he has done in his treatment but he isn't sure how much further he can take me> Wanted to get me off the prednisone as soon as possible. It took a few months to step down from 60 and as I was stepping down he kind of left the judgements up to me he gave me guide lines but said if you start to feel pains or flares and need to step it back up do so. Just keep me informed. I only had to do this once my initial step down he went from 60 to 50 and that caused some trouble so we stepped it back to 55 and did 5 mg step downs from there out. So when I seen my new doctor he was pleased to hear I wasn't on prednisone but also knew what I was about to face in the switch and talked with me about it. We are both hopeful and optimistic I wont need it again but .... as I said time can only tell.

  10. #20
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    Hi Chris and welcome! I'm sorry I'm a bit late to join the discussion. I think you're in good hands with Dr. Spiera. I've heard good things.

    I only have sinus involvement but I did not get a nasal biopsy because my case was caught early and likelihood of a false negative is very high. I do sinus rinses and use nasonex but I haven't found much to help really. Massages are my favorite alternative medicine.

    I hope you get a definitive answer soon. Wishing you the best!

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