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Thread: New Member/New to Wegener's

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    Smile New Member/New to Wegener's

    Hi Everyone,

    I have recently been diagnosed with Wegener's a few months ago and started taking prednisone, cytoxan, bactrim and several vitamins, minerals, etc along with Fortical (for bone loss)

    I am one who never gets sick or even gets a cold. But Wegener's has left me with high blood pressure, arythemia (spelling??) hearing loss, coughing, exhaustion, joint pain, nodules on my lungs and sinus discomfort.

    My rheumologist is taking care of my Wegener's and I also see a pulmanologist, cardiologist and an ENT.

    Since taking the med's, which has only been a few months, I have noticed an improvement. Not great but an improvement. I am no longer exhausted although I am tired. My hearing is back, the cough is not as bad as it was but still there, the joint pain is not as bad. Wish the feeling of my sinuses being conjested would clear.

    I'm happy to have found this site as I don't know anyone with Wegener's and not many people I speak to have even heard of it. (Neither did I until now). Hopefully I many of you can answer any questions I might have.



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    hi lady march and sadly welcome to our community.i like you was never ill,just the odd cold,nothing that interrupted my daily life.now,if it wasn't for the car i wouldn't get out of the house.it's good that the meds have helped.what doses are you on? you've got to be prepared for the long haul as far as meds are concerned.they are what keep us alive.as far as questions are concerned,ask away.there are a lot of wise and helpful people here.
    john.

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    Thanks for the welcome John.

    Right now I am taking Sulfamethoxaole (which is a sub for Bactrim) 40 mg prednisone down from 60 mg and 100 mg of cyclophosphamide.

    I understand about the long haul of taking the meds. Ugh some days they are a pain to get down. Especially when they start to dissolve before I can get them down.

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    Hi Lady March,
    Welcome to the group! I was just like you--never even got colds before. My Wegs doc says that's fairly common with Weggies and is why many of us have such a difficult time accepting that we have a disease.

    I don't have sinus issues, but the others who do can give you a lot of great advice for dealing with the congestion.

    Why did they put you on Fortical?

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    I was diagnosed with WG at age 55 (I'm 61 now). I'd never been sick beyond an ordinary cold my whole life up to that point. Doesn't this sound familiar? Anyway. welcome to our group, Lady March. Believe me, if you have questions, any number of us will fill you in, from our experience.

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    Quote Originally Posted by Lady March View Post
    Especially when they start to dissolve before I can get them down.
    Euch! Nasty isn't it?

    Best thing I found for my sinus congestion was irrigation with saline solution. There are proprietory brands of solution and equipment, but I used to use salt with bicarbonate of soda in a syringe. It stings a little at first, but clears the sinuses without all the nose blowing and subsequent damage that can cause.
    It is also known as the Yoga practice of Neti.

    Sounds like you are in the fairly early days of treatment at the moment (I'm afraid this will take many years), but you can expect to improve beyond how you feel now as the disease is brought under control and your medication is backed off.
    Last edited by Jack; 07-31-2009 at 04:02 PM.

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    Thanks all for your welcomes.

    Jack, although I feel as if my sinuses are totally congested all the time when the ENT or any of the docs look inside all is clear.

    Do you think doing what you suggested would help? I guess it couldn't hurt.

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    The irrigation flushes out mucus and crusting so if your sinuses are clear this may not help you. Perhaps worth a try though. It won't do any harm. If you need any help I can give you details otherwise there is plenty of information on the web or from other members of this forum.

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    Here is a recipe my ENT gave me to help clean out the nasal passages (yes! thise same passages that appear clear when the docs look in your nose and we all know they are not clear)
    I hate doing this cleaning, but found that I must do it at least one time a day (should be more some days) to keep me breathing comfortably. Take it from someone who had to have a trach put in that breathing is a good thing!
    OK the recipe:
    1 quart water
    4-6 tsp pickling salt
    1 rounded tsp baking soda
    1 rounded tsp karo syrup

    I am not an exact recipe follower so don't worry if your numbers are not correct.
    I use a squeeze bottle or a bulb to spray this up my nose. Remember to keep breathing while doing this. At first it is quite uncomfortable, but I found that after doing in daily, it does get better and does not hurt any more. I have had sores in my nose so that is why it did hurt at first.
    there is also the nettie pots that people use for cases such as this.
    I make a new mixture about every other day and keep it at room temperature. I warm it briefly prior to use, but be careful it is not too hot! Cold is not great either btw.
    My recipe says you can keep this mixture for one week, but after that week it should be discarded. It also says you should do this 4 times a day and it may burn a bit at first. Like I said, I do not like doing it, but find it necessary so I only do it once, sometimes twice a day.
    I hope you give it a try for at least two weeks before giving up on it and then tell me how it goes.
    OH yeah---welcome to this forum and we all have experienced all or some of your symptoms. The hbp is frustrating, but manageable, the sinus can be somewhat managed with daily flushings,and exhaustion and joing pain does get better with the medications. Not perfect, but better! Just don't set your recovery hopes too high too fast. After all this is your new normal. That is the best advice I got when I joined this group 8 months ago.
    Lisa Coffeelover

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    Thanks Lisa. I assume you mean kosher salt when you say pickling salt? I wonder why Karo syrup.

    I may give it a try.

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