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Thread: Please explain what Wegeners really does.

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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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    Quote Originally Posted by annekat View Post
    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?
    My guess is the Wegs causing inflammation and swelling which creates the pain. But it is considered temporary unlike many types of arthritis where there is physical damage to the joints that will remain. In Wegs if the inflammation goes down or away so will the pain. The inflammation markers like CRP and SED rates might correlate with this pain.

    Langford said this about GPA:

    /http://www.rheumatology.org/Practice...8Wegener_s%29/
    Last edited by drz; 05-06-2013 at 02:03 AM.

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    Before I was diagnosed with Wegener's but I knew I had Rhodatarula. the doctors had no reason for my symptoms so they started me on cortisone and lots of other things. I think way to many antibiotics and when they didn't work even stronger, plus all of the anti-inflammatory medicine was killing my kidneys. I also cried a lot for no reason I could think of and lost a lot of weight very quickly and also had the same problem of saying I was tired all of the time but that I couldn't sleep. After a long period and after biopsies and all the tests I was started on predisone, heat medication, relaxants, muscle relaxants anti- depressants and sleeping pills. What a mess I was That time I stayed on the Pred treatment for over six months then slowly came down to just 5mg. I stayed on that for a long time and if I started to have a flare they would take me back up to 30mg for a few weeks and then bring me down again. I was in a continuous circle and there seemed no way out. After I started to ride again and do some experimenting on myself for about six months, I realized that I started to feel much better and the side effects of the medication was diminishing too so I decided on my own to stop all of my drugs. I didn't have doctors permission but I had told them and none of them tried to talk me out of it.Until September last year I was pain free, drug free and felt great. The doctors were getting interested. Now our special horse has gone lame and my friend with cancer and myself have both been going down hill fairly fast. We still do exercises on other horses but it isn't the same and the results aren't the same. I am training my horse to do this type of therapy while we anxiously wait to find another vaulting horse.. In the meantime my horse helps a lot and is learning quickly and I pray we go back into remission again. ANIMO, Barbara
    Last edited by Barbara N; 05-06-2013 at 07:17 PM.
    My blog: Animo

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    Quote Originally Posted by annekat View Post
    Anyone who can shed some more light on this, I'd appreciate it. What is really happening with Wegs joint pain?
    I'm really interested too. Like drz says
    But it is considered temporary unlike many types of arthritis where there is physical damage to the joints that will remain.
    I would like to know if there is any scientific result on GPA-damage of joints and ligaments.
    So far I haven't seen any, and my GPA docs couldn't answer most questions on this subject either, when I asked them over the past two years.
    My specialist said my jointpain 'fitted the ANCA-pattern'.
    Living with WG/GPA since june 2010...

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    Quote Originally Posted by [email protected] View Post
    I'm really interested too. Like drz says

    I would like to know if there is any scientific result on GPA-damage of joints and ligaments.
    So far I haven't seen any, and my GPA docs couldn't answer most questions on this subject either, when I asked them over the past two years.
    My specialist said my jointpain 'fitted the ANCA-pattern'.
    The reference links do note that arthritis often follows the Wegs inflammation of the joints and that could well cause lasting damage. We know the treatment meds also predispose us to a number of other complications and some of those side effects also seem long lasting. Jack often talked about how pred had ruined his body. CTX increases our risk of certain cancers. Loss of bone density is one issue many of us also have to deal with. And the list can get real long if we start to include everything but as long as it all helps keep me on the green side of the grass I am happy about it.

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    The joint pain thing seems pretty mysterious and the docs don't seem to be able to say much about it. Maybe I'll PM Sangye some time and ask her again for her take on it, why she says there is no damage even though we feel pain. I think someone mentioned nerves earlier in this thread, maybe part of what we are feeling is nerve pain around the joints when they get inflamed. But I guess pain is always carried through nerves?
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    But I guess pain is always carried through nerves?
    I guess that is the case.
    No nerves, no pain, lol.

    Thanks for your answers so far.
    Tomorrow I'm seeing my GP, next month a have an appointment at the vasculitis centre again.
    I'll take the 'arthritis'-information with me...
    Living with WG/GPA since june 2010...

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