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Thread: Those with Sinus involment

  1. #21
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    My sense of smell and taste seem to come and go as well.

  2. #22
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    BBQing a blackbird, Cindy?

  3. #23
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    Hi Cindy, you are not alone, I haven't had a sense of smell or taste for a I don't know how long (although it doesn't stop me from eating..lol good old Pred), I find it really depressing when people are enjoying a lovely meal or even better, dessert :-) and raving about it and I find myself just agreeing with them, but at the end of the day it tastes like nothing....I guess now for me its all about the texture of food.

    What does concern me with the lack of smell is i worry if there is a ever a fire or anything like that, cause honestly the neighbour burnt toast the other week and I had friends come over saying can you smell smoke in the hallway, its terrible, nope sorry couldn't smell a thing (therefore I have extra smoke detectors placed around my unit), its a bit scary!!

  4. #24
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    That's very scary! How are you feeling these days, Kat?

  5. #25
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    Hey Sangye, yes to smell would be a wonderful thing, sometimes I feel like getting a couple of drinking straws and sticking up my nose...lol

    I am doing heaps better joint wise, but energy levels are zapped still, do you think its worthwhile looking at any herbal energy boosters (thought you'd be the lady in the know)? Last night went to watch short film festival in the park and was home by 10pm, I've only just dragged myself out of bed at 10.15am and feel exhausted, actually it feels like when your coming down with the flu...its ridiculous, I mean I was just sitting there watching movies.

    As for my sinus area and crusting, my word they are getting worse (on another thread I posted reply that my ENT see's me weekly now and also wants to up the Pred) - the sinsus isn't responding, well it seems to for a few weeks and then resorts back to its old self, sinus area is extremely sensitive and the crusting is like nothing I've seen before (even took a photo this morning to show my ENT as it doesn't seem as bad when he cleans it out but he doesn't see it first thing in the morning either, I'm talking thick/bloody/crusting as long as my index finger...gross I know...but that's what i deal with at least twice a day (and yes I sinus wash and lubricate daily and also use nasal spray throughout the day at work - nothing helps). :-(

    And how are you traveling on the WG road?

  6. #26
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    Quote Originally Posted by katwoman View Post
    do you think its worthwhile looking at any herbal energy boosters?
    No-- that's very bad idea. They work by stimulating the adrenals, which stimulates the immune system. That works against the drugs. Also, pred depletes the adrenals quite profoundly, and stimulating them with herbs is like whipping a tired horse. Very damaging.

    The exhaustion might be par for the course for having active Wegs, but it might also indicate your Wegs is not being controlled well enough by the meds you're on.

  7. #27
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    I agree with Sangye, Katwoman. Wish the Rhuemy can find a drug that will fit you. It does sound to me that your WG is active and makes you tired. The bloody nose, that is active WG. I get asked often by the Rheumy if I am having crusting, bloody nose, coughing more that usual, short of breath, joint pain, more fatigue....that is how I do my head to toe assessment.

  8. #28
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    Thanks Sangye, will steer clear of them, just wish I had more energy, I'm 36 but feel 63 sometimes!

  9. #29
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    hi katwoman i have the same nose problems as you the crusting is the torment of my life .
    people dont understand how annoying it is having to clear your nose on a daily basis just to breath easier
    and at the moment i have a constant whistle sound which is caused by the perforasion which im seeing ENT on 23rd april but wg consult says he might not want to repair will wg active depends how bad it is
    i was adviced to stop using nasal sprays by two consults because it was making it worse but i do use Batroban regularly
    im still on 30mg of pred and that seems to have helped relieve sinus pain anything less at the moment and i swell up straight away
    DEEx

  10. #30
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    Quote Originally Posted by DEE View Post
    i was adviced to stop using nasal sprays by two consults because it was making it worse
    Hi Dee, sorry the nasal spray I was referring to is Fess non-medicated isotonic saline solution, so basically salty water.....I don't use the steroid based nasal sprays. Hope your appointment goes well on 23rd, make sure you let us know!

    Wish I could have my nose repaired, my sister-in-law took some photo's of me with my new niece but i deleted them as they were side on and my nose is just aweful - I hate it!!

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