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Thread: sinus issues

  1. #11
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    Yeah, a lot of us, including me, have that annoying cough from stuff dripping down out of our sinuses and collecting in our bronchial tubes. It can cause difficult breathing, too. It gets better over time, but for me is worse in colder weather and toward evening. I no longer wake up from it as much, once I'm asleep it calms down, but I may have a bit to cough up upon arising.

    I guess some people have more big blobs of stuff in their nasal cavities than others.... there have been threads on here about that. But coughing a lot from nasal drippage could be a sign there is more in there than you think, as the thinner mucus builds up to try to expel the blobs. One of our members uses a WaterPik with a special nasal attachment and recommends it highly.

    I hear you on the self-prescribing. With my joint pains, I did it out of desperation because I hadn't been diagnosed with anything, had been tested negatively for RA, and didn't have time to go to a doc nor the faith that they'd help me, for some reason.... so I got some pred from an online Canadian pharmacy. Not recommended, but it worked out for me. Now that I have Wegs, there is no problem getting pred, and with the amount I'm taking, currently 7mg./day, there are no joint pains. I might expect them to return if I try to taper below 5mg., based on others' experience. And some still get them with higher doses of pred.

    Three years into my Wegs career, my doc has given me permission to regulate my own taper of the pred and my current immunosuppressant, which is MTX. At your stage, you are probably wise not to self-prescribe, but you are the one who lives with this 24/7 and you do get a feeling for how the meds are affecting you, so I'm glad your doc allowed you more pred when you and the Gastroenterologist felt you needed it. Many, or most, docs are not very experienced in treating Wegs, and a lot of docs do have that attitude about you following their orders, despite a possible lack of experience with the disease. I have learned so much from this forum about these meds and how they are regulated by different docs in different people's situations. This does not make me qualified to self-prescribe, necessarily, but it sure helps me to know a heck of a lot more than I would without the forum, and to be able to make suggestions or drop hints to my doc, who is not very experienced with Wegs. He is a bit of an arrogant guy, but has actually backed down and let me do things my way on several occasions. He has also been proven wrong on more than one occasion. Docs are human, too.
    Anne, dx'ed April 2011

  2. #12
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    Quote Originally Posted by annekat View Post
    Three years into my Wegs career
    A career? Really? YOU are tooooooo funny Anne! mumble mumble...LOL!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


  3. #13
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    Quote Originally Posted by mishb View Post
    In regards to your question on the blocked sinus - No, it doesn't really go away.
    Most of us have been doing rinses from day one which may have been years ago.
    I am happy to tell that now, 3 months after my second rtx, I almost don't have "productions" from my nose.
    I didn't do rinses. I couldn't bear it. I was just making warm showers and blowing patiently untill the stuff came out. sometimes I waited couple of days untill it came out.
    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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    Quote Originally Posted by Dirty Don View Post
    A career? Really?
    def being a weggie is full time job career
    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.

  5. #15
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    Quote Originally Posted by Alysia View Post
    def being a weggie is full time job career
    Thanks, Alysia, for the backup on that. Don, I guess I just didn't know what else to call it.

    I might add, to the issue of stuff in the sinuses, rinsing or not, getting the stuff out, that ENTs are equipped to go in there and lightly suction and pull the stuff out. Mine dives in there with no warning, and the first time he did it, I was like, what are you doing? I actually have only had it done maybe two or three times and he said I could come in every couple of months for it, but I haven't. There seems to be quite a bit less stuff in there than there used to be.
    Anne, dx'ed April 2011

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    The stuff in my sinuses is a lot drier now - I guess more crusty

    Initially it was very slimy and slug like, so I gather it is getting a little better........however on saying this, the drier crusts really clog the sinus up a lot harder and therefore a lot more resistant to budging.
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Quote Originally Posted by annekat View Post
    I might add, to the issue of stuff in the sinuses, rinsing or not, getting the stuff out, that ENTs are equipped to go in there and lightly suction and pull the stuff out. Mine dives in there with no warning, and the first time he did it, I was like, what are you doing? I actually have only had it done maybe two or three times and he said I could come in every couple of months for it, but I haven't. There seems to be quite a bit less stuff in there than there used to be.
    I go in about every two weeks to have mine cleaned out at the ENT. Coming off of a nasty flare, where the sinuses were the major issue, it is taking that many visits to keep the crusts down to a minimum. Even though my rinsing is aggressive, if I don't go every couple weeks, the crusts start to cause some restriction of airflow through my nose and sinuses and I'm miserable again. When he gets the big crusts out, it feels so good after the visit being able to BREATH again!
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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