Strange back ache and behind knee pain

[Victoriaitsnosecret]

Lilly- what happened with your sinuses? I have the nose deformity. Sometimes I have swelling on the upper sides of my nose. I compare it to a plant roots. It has to be seen I guess I can't describe it well. My nose is still crusty and bleeds.


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[Lilly]

Wow, I cant believe our chances of getting blood clots is so much higher than the norm. That is really scary! I have an aching pain behind my knee, but it has gone away since I started eating differently, along with my other knee, that has a total knee replacement. No pain at ALL! After 4 years of constant pain, it is so nice. No more Hip pain, its gone too! But I do have pain in places that have issues other than inflammation, like my bunions on my feet, that is bone deformity, and it is getting worse. No diet will help that! And I can sleep on my side now, with my knees bent, instead of like Dracula in his coffin....flat on my back so my hips and knees don't wake me up.....and along with a lot of my pain gone, Ive lost 15 pounds! I still have 15 to go, but I feel so good. Even my memory is better! I can remember names......I haven't been able to do that in years!

[Lilly]

Hi Victoria, My Wegeners pretty much attacked my sinuses, like yours, crusting and bloody, and throat and lungs the most. The worst is in my face. Early on, I had a few sinus surgeries to remove trapped congealed blood/normal sinus drainage in my sinuses. Wegeners closed the holes that let your sinuses drain. So they made BIG ones so it would take awhile for them to close back up. So my sinuses drained ok. Then infection of ears, tubes full of congestion, sinuses backing up again......several surgeries. At the time, over the years, As time went on, nose crusting, bloody, cartlidge in nose going away. Wegeners was pretty much destroying it. Then eyes became involved, tear ducts closed up. I got almond shaped pus filled pocket under my eyes, that looked like I had a deformity under my eyes. The dr would just insert a needle, drain out the pus, and under my eye would sag for a day, and tighten back up. Then the other eye...Over and over until they finally did a DCR (acronym for very long words) but they put a tiny flexable hollow tubing through your top and bottom tear ducts. So this keeps the ducts open. But each time it healed and they took the tubing out, within 6 months, the hugh pus pockets were back. Then I had to get tubes in my ear. Around this time, my nose was becoming just one big open air hole, no sinuses left. My septum had a hole in it, and my nose began to slowly sink into my face, known to us weggies, as "saddle nose" My nose was flat on my face. I was so self conscious. I had a big Indian nose, and now it was just gone! It was tough on my identity, because it was something you could see on the outside. So a EENT and Plastic Surgeon at UAB in Birmingham decided to get togather, and tag team me for a double surgery. An intense sinus scraping/cleaning, sucking out old stuff that was stuck in ears and nose cavity. And then Plastic Surgeon would "build" me a nose. It turned out wonderful. He used Cadaver cartlidge to build my septum back, and lifted it as much as he could, so when it settled it would look good. I was sooooo happy! Then before a year was up, my nose was falling again,,,,,,,,,wegeners likes to eat cartlidge! So we scheduled another surg. He used my own cartlidge taken from behind my ear, and just to be on the safe side... he also put in a piece of hard plastic, in case the cartlidge "went away", so yes, wegeners likes my own cartligde too, so the only thing holding up my nose is a piece of plastic. But I am thankful. Its a small crooked nose, but look around, lots of people have funny little noses like mine! So no worries. But the inside of my sinuses were still at work, and my tear ducts just would not stay open. Tears were constantly running down my face, I carried tissue around all the time, it was in every pocket, purse, etc. So I have the last resort. Jones tubes.....glass tubes placed in the corner of your eye and go into my sinus cavity to drain. The first tube was too little, and my nose ate it. I prob swallowed it. So my dr orders larger ones, put one in each eye. They criss cross inside my sinus cavity like an X. I irrigate every day or every other day. I go to the ENT for 3 month sinus cleanings, to remove what I cannot get out, since I cannot see in there......He has a camera! So I get to see in my nose......Its just a big empty hole! With crusting and looks like the surface of an unknown planet! Im just trying to take care of it as much as possible. I don't know what else could happen! Also, this deterioration and the glass tubes, and irrigation causes me constant pain. Its in my teeth, like I want to bite something. They ache like they are all loose. My cheeks throb from the inside, and my forehead sinuses (which no dr will touch) are full and so its like I have a sinus infection every day. I take strong meds for this pain, I hate it, but otherwise I would not be able to concentrate on life! The pain overrides my ability to think. Like a migraine in my face. So Its a long story because its a 23 year story. But that is my sinus story. I hope I did not overwhelm you. I actually left out a few smaller things along the way. This disease has kept me busy!, That's for sure.
Victoria, how long have you had wegeners? Do you irrigate?

[Victoriaitsnosecret]

Hi Lilly- thanks for sharing with me. I was diagnosed about a year and a half ago. Considering the size of the cavities in my lung and the damage to my nose it was probably festering for a while. I had a stuffy nose for like 2 years but thought it was allergies. I did Flonase and that didn't help. I was feeling really fatigued but thought maybe it's just the demands of work and family thinking back though it was pretty extreme. I got diagnosed by accident. I went to the ER for pain in my left shoulder/arm and I thought cardiac or really bad anxiety. They did routine chest x-Ray and it showed the cavities. I had 3 biopsies before finally getting diagnosed which took about 3 1/2 months after my ER visit. The fatigue got to the point where I couldn't work anymore. I would like cry the night before work because it was do hard to get through the day. My treatment was prednisone and methotrexate. I've been off prednisone for a few months now and these new symptoms have started. The joint pain and stiffness, the backache. What looks like swollen sinuses is my guess. My situation is much better than some of the other stories I've heard. This is the weirdest disease ever. My kids took to calling it the booger disease because I'm always blowing my nose or rinsing nose or sniffing saline. Soo fun. Take care and thanks again.



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[ingemlb]

Dear Lily and Victoria. Thanks for sharing your experiences. What a nightmare! I am beginning to feel extremely lucky to have gotten a diagnosis before major damage was done. Which is what my eye specialist said today "How on earth did they manage to do a diagnosis, this is such a difficult disease to pin down".

In my case it was the c-anca that put them on the right track. When I hear about all the major problems various people have on this forum I can now understand why my specialists in the hospital were so baffled by my lack of other symptoms. I thought having ulcers up and down the gastric tract (from mouth to anus) was bad with the flaring eye inflammation and sinus issues. However that seems nothing compared with what most people are going through. I just hope all that is not ahead of me

I had badly diseased sinuses which I had operated on last October. The ENT specialist was very happy with the surgery. He removed the diseased tissue, some polyps and widened some passage (flap) so it was quite extensive surgery. But the inflammation came back immediately. When I saw him from hospital for a biopsy he told me that once a year he gets a case where the surgery doesn't fix the problem and it usually turns out to be Wegener's. Well guess I fit his statistic.

I had severe symptoms without any of the damage you describe so I can only barely imagine how awful it must be for you both. Sounds like your disease is not being contained by your medications. I sure hope that the MTX will do for me as I don't fancy having anything much stronger and I do want to get off the Prednisolone. So far the reduction in dose from 40 to 30 seems to be working however I am not sure about this back/side pain near the kidneys. will see what the GP thinks on Friday.

Thanks again. I so hope you will both have some kind of breakthrough and stop this horrible disease from progressing any further.