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    Default Please explain what Wegeners really does.

    Ok, Wegeners is an Auto Immune disorder which the small vessels get inflamed and prevent blood flow from reaching the organs. Can someone explain why the patient feels so week , why the body pains. the loose of muscles etc. After reading some stories here I see Wagner's affect more than organs.Ive read about deaf, why? Why the weight lost if the person is eating normally. Please help me understand this disease. Its so much more complicated!

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    Wegs is one of the most complicated diseases ever.

    The weakness can come from active Wegs that causes muscle loss and Wegs itself suppresses the immune system which is part of our strength overall as well. Weakness also comes from damage due to Wegs in the joints and muscles. And it can also come from antibiotics to treat infections along with Wegs and of course the immune suppressants to treat the Wegs itself. Prednisone also causes weakness and also suppresses the immune system.

    The pain can come from infections, active Wegs causing inflamation, especially in the joints.

    Muscle loss is caused by Wegs and Prednisone and some infections as well.

    Wegs attacks the auditory nerve and a lot of time with active Wegs there is an infection as well and if the infection is in the middle ear it can cause fluid in the ear and cause conductive hearing loss. Wegs can also damage the bones in the middle ear and the cochlea.

    I hope this helps you some but only a Wegs specialist can truely due your daughter justice.
    Phil Berggren, dx 2003

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    The root of the problem is that Wegener's causes inflammation in the same way that an infection would and this is why it is so easy to misdiagnose and treat with antibiotics.

    So imagine that you have an infection of your sinuses. In fact, imagine that this infection has spread all through the plumbing in your head including ears and eyes. You can see that hearing loss, sinus pain and eye problems would not be unexpected. If you then go on to imagine the infection affecting joints, skin, kidneys, lungs etc. and it is no wonder that you end up in poor condition throughout and start to loose weight and lack energy. Your body just can't cope with this sort of attack!
    Jack

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    Quote Originally Posted by pberggren1 View Post
    Wegs is one of the most complicated diseases ever.

    The weakness can come from active Wegs that causes muscle loss and Wegs itself suppresses the immune system which is part of our strength overall as well. Weakness also comes from damage due to Wegs in the joints and muscles. And it can also come from antibiotics to treat infections along with Wegs and of course the immune suppressants to treat the Wegs itself. Prednisone also causes weakness and also suppresses the immune system.

    The pain can come from infections, active Wegs causing inflamation, especially in the joints.

    Muscle loss is caused by Wegs and Prednisone and some infections as well.

    Wegs attacks the auditory nerve and a lot of time with active Wegs there is an infection as well and if the infection is in the middle ear it can cause fluid in the ear and cause conductive hearing loss. Wegs can also damage the bones in the middle ear and the cochlea.

    I hope this helps you some but only a Wegs specialist can truely due your daughter justice.
    If Wegeners supress your immune system then why take medication to suppress it more? I guess it attacks more than the small vessels.

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    Most of the above is correct, but I want to make sure a couple things are corrected.
    1) Wegs does not damage muscles or directly cause muscle loss.
    Wegs can cause nerve damage by affecting the blood flow to the nerve. Then, if the nerve isn't functioning properly that can lead to muscle atrophy. This might sound picky, but it's not. Some diseases cause direct muscle damage and Wegs is not one of them. Wegs doesn't always affect the nerves. Muscle loss before pred is usually due to inactivity. Many people are quite sick and/or in pain, and their muscles atrophy with disuse. Also, pred causes muscle loss directly. (It cause muscle loss and fat retention. It does the opposite of anabolic steroids that people take in sports.)

    2) Wegs doesn't damage the joints.
    Wegs can cause joint pain and inflammation, but it doesn't damage the joints. When the Wegs is treated the joint pain disappears. This is very important. We don't want people thinking Wegs is like RA, where the joints are severely damaged over time.

    What causes fatigue? The body uses a lot of its resources to deal with a chronic illness. Also, pred causes adrenal weakness which directly causes fatigue. Many of the drugs have fatigue as a side effect. Chronic inflammation is very exhausting to the body. It requires a huge amount of energy.

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    I hope there isn't an exam afterwards because I don't think I have the whole thing figured out yet.You should all get together and put out and owners guide on how to let Wegener's share your body. We are lucky to find out so much here but there is still so much more everyone could add to It is so complicated especially if you are living in an area where WG is not well known. Moving is not always a possibility. I am still knew to this sight and everyday I am learning new things about my condition and hearing stories that affirm my belief that you can go into remission for a long time and the importance of staying strong, positive and healthy Good health to every one, Barbara
    My blog: Animo

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    Quote Originally Posted by Sangye View Post
    Most of the above is correct, but I want to make sure a couple things are corrected.
    1) Wegs does not damage muscles or directly cause muscle loss.
    Wegs can cause nerve damage by affecting the blood flow to the nerve. Then, if the nerve isn't functioning properly that can lead to muscle atrophy. This might sound picky, but it's not. Some diseases cause direct muscle damage and Wegs is not one of them. Wegs doesn't always affect the nerves. Muscle loss before pred is usually due to inactivity. Many people are quite sick and/or in pain, and their muscles atrophy with disuse. Also, pred causes muscle loss directly. (It cause muscle loss and fat retention. It does the opposite of anabolic steroids that people take in sports.)

    2) Wegs doesn't damage the joints.
    Wegs can cause joint pain and inflammation, but it doesn't damage the joints. When the Wegs is treated the joint pain disappears. This is very important. We don't want people thinking Wegs is like RA, where the joints are severely damaged over time.

    What causes fatigue? The body uses a lot of its resources to deal with a chronic illness. Also, pred causes adrenal weakness which directly causes fatigue. Many of the drugs have fatigue as a side effect. Chronic inflammation is very exhausting to the body. It requires a huge amount of energy.
    this is interesting, why then, if i would consider myself mostly in remission (5mg pred, +METX) would i hae such screaming pain in my joints and core of my bones like legs? my inflammation should be down and IK in my face it most shorly is, even if im retaining some puff from pred
    Experience is the only way to survive. <3 Rini Orange

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    Quote Originally Posted by Rini View Post
    this is interesting, why then, if i would consider myself mostly in remission (5mg pred, +METX) would i hae such screaming pain in my joints and core of my bones like legs? my inflammation should be down and IK in my face it most shorly is, even if im retaining some puff from pred
    You have some options here: 1. you're having a flare, 2. your pred needs a change, 3. you're having a withdrawal from recent pred reduction. That's about it, unless you've added something else to the pan...sorry...get better.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    My Orthopedic told me that wegeners damages the ligaments in the joints and that is what makes your joints hurt so much or even feel like they have dislocated for a short amount of time. Sometimes I really feel like my knee or shoulder, ankle etc are out of place usually during the night and I can't even move or use them then it just disappears If you have been treated for a long time I think there is a good possibility that all of the medication especially the anti-inflammatory ones you probably caused a lot of damage before you even knew you had WG
    My blog: Animo

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    I've always taken notice when Sangye or some other info source says that Wegs does not damage the joints in the way that RA does. If true, that is a good thing for us, but then I'm wondering, why are we feeling the pain if no damage is occurring? Barbara, your comment on ligament damage is the first I've heard, and I'm wondering if this is permanent damage. I know the joints and ligaments are related but am still confused. Anyone who can shed some more light on this, I'd appreciate it. What is really happening with Wegs joint pain?
    Anne, dx'ed April 2011

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