Please explain what Wegeners really does.

[maria garcia]

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!

[pberggren1]

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.

[Jack]

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!

[maria garcia]

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.

[Sangye]

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.

[Stephanie78]

If Wegeners supress your immune system then why take medication to suppress it more? I guess it attacks more than the small vessels.

The way Johns Drs. explained it was...The disease fights the immune system which supresses it. However to rid of it (meaning remission NOT curing) they have to basically destroy your immune system and fight it will a stronger drug (CTX being one)

We too "thought" that the disease harmed muscle. However the rheumotologist told us that since John was very muscular in his arms and legs (No fat) that when he got so weak and started losing weight, the muscle was the first to go (Since he had no fat to lose) Wegeners does cause inflammation which can cause stiffness and joint pain (John had/has that bad and sometimes not able to walk) but it is not where the disease is "destroying those areas" it is effects caused by other symptoms of the disease which can also be mistaken when it is actually side effects of medicines the person is on.
Right now John is horribly sick. We have to have someone watch him while I am at work and he is continuing to lose weight. I'm convinced that although it may be partly due to the disease the meds are more to blame at this point.
John had mainly sinus involvement to begin with , but due to improper treatment (for only 2 weeks) the disease progressed very quickly and he now has lung and kidney involvement. Due to the sinuses being attached to the ears and throat he has issues with both of those areas. He has lost some hearing in both ears and they ring all the time. He has lost strength in the back of his mouth (Tongue) and throat that keeps him from swallowing anything other then soft foods. Then there are times that when he swallows his body will heave (No nasuea) and he will vomit everything. This disease is the most confusing disease ever, even the doctors at UNC agreed with that.

It is a very well known fact on here that people are misdiagnosed for YEARS and mistreated. As a parent (Maria) you have to find your daughter help. If the one doctor does not want to test her GO TO ANOTHER ONE. My husband is proof that it doesn't take long to go down hill. Trust me. 2 months ago we went biking in the park He rode his bike for 3 miles. He loved going for walks around the community. He never had a sick day in 15 years! He never took meds other then a one a day vitamin. He ran for enjoyment/exercise (Not sure who in their right mind would enjoy running....LOL) And today he sits at my parents house while I am at work so my mom can care for him. He takes 11 pills a day and has a routine that takes 20 minutes for different things for his sinuses and ears and is having chemo treatments. He has lost over 40lbs in a 6 week period of time, his cheeks are sunken in, he is flushed all the time, his eyes are glassy, he doesn't talk, he can barely eat, he falls easily, he sleeps a lot but then complains that he doesn't sleep. When he goes to the bathroom he has to leave the door open in case he falls (Which he has) someone can get to him. He cries a lot..He is not the same person. This change happened within 2 weeks!!!!! Be your daughters advocate and FIND a dr who will help her. Get a biopsy to confirm she has WG. Please!

[delorisdoe]

In the ten years I have had this disease I have never asked any doctor to explain it to me. As of right now I know more about wegners than I did before. thanks guys. lol

[vdub]

This is a good thread. I hope more people add to it. I'm like Leigh in that I've really never known exactly what was going on, why it attacked where it did and what I can expect in the future. Part of that was because I was just more concerned with staying alive for the first 9 months or so. About 5 months ago, the focus shifted from "staying alive" to treatment. As most everyone else, I have done a lot of research, but not necessarily on wegs itself, but other aspects like side-effects of the many drugs and trying to figure out why I was feeling crappy (still haven't figured that out, btw).

I guess we all know it is a vasculitis disease, but why does it attack so many different areas and affect people so differently? Why is someone's toe toasted and mine is fine? Same with hearing.... While some people have gone deaf, my hearing is fine. I think one really common issue is the sinuses.... That one thing seems to crop up more than anything else....

I sure do love the internet.... If you can seperate good sources of info from bad, then it's a wealth of info....

[maria garcia]

Tuesday it will be done. Im scarred to death but its a must! Your husband story has convinced me to find the truth.

[maria garcia]

Auto immune supresants is given as the medication for Wegeners. If your immune system gets so suppresed then your going to get sick from something else. How long does usually a patient have to take the chemo? After the chemo is over do you usually go into remission for a long time?