Strange back ache and behind knee pain

[ingemlb]

Just wondering if I should be following this up but lately I am getting these sharp pains (take my breath away) just very fleeting in my back, right hand side around near the waist under the ribs. Sometimes I can bring them on by moving. They don't happen often, maybe once or twice a day at most. They go so quickly that I have been ignoring them but was wondering if anyone had any ideas?

Also for some weeks now have constant mild pain behind my right knee. I don't believe it is a FLARE as it hasn't spread. Seems to be increasing in intensity. So was now wondering if I should get it checked. I showed my Rheumy earlier in the week and he looked at the knee and noticed no swelling so wasn't worried about it.

I am assuming it is totally unrelated but then again ... I don't have any experience with Wegener's other than recent. Last time I had a flare in hospital it started under the foot, then the ankle then the back and side of the knee then the shoulder. My shoulder is fine so are my feet.

This started a few weeks ago long before I reduced the pred. If anyone has any advice would be appreciated. :) Thanks

[Alysia]

Hi Inge.
I am sorry for your pains. are the pains around the joints ? if so, then they may be wg-related. so I think it is better to ask your doc.

[ingemlb]

Hi Alysia. The knee is a joint but the back pain is not near a joint. I did show the knee to the Rheumy and he looked mainly for swelling and as there was none and the pain is at the back of the knee he wasn't concerned. But I think I will get it checked out as it's been going on for weeks now and seems to be getting stronger.

The other pain in the back I guess I was wondering if it could be the kidney. it's mainly on one side. There is a small trace of blood and protein in the urine but again the amount didn't worry the Rheumatologist at the time however I didn't mention the back pain during the visit. Forgot as it is infrequent.

[windchime]

Good Morning Inge,

I'm sorry you are having pains. They can be so annoying at times. The knee--could it be because you've just started walking on the treadmill? If you have arthritis in that knee it could rear it's little head with the working out. It could be a worn out meniscus (I have one of those and it gets achey). I don't know how far you are walking, but maybe reducing how far you are going to see if it reduces the pain. Other than that a visit to the orthopaedic for an X-ray and/or MRI.

The sharp side pain could be related to the kidney, but could also be other things. A visit to your PCP might put your mind at ease.

Sorry I couldn't be of more help. I hope you feel better soon.

[renidrag]

Definitely get the knee pain checked out. I had stinging pain and went to Doc's but of course it didn't hurt when there. Two days later in emergency they did an ultrasound and found a clot just above the knee. Just so you know for being part of the Wegener's club you also receive a 23% greater chance of clots then the average bear.
Dale

[ingemlb]

Thanks Cindy. I do have a torn meniscus but on the other knee however in that particular knee I have a baker's cyst. Apparently they can start to play up as well. The pain started long before the treadmill arrived and it wasn't getting worse until the last couple of days so I didn't think moving it aggravated it much. I manage most days to do 20 to 30 (max) minutes walking at 4kph so it's quite a slow walk (usually do it over 2 to 3 sessions)

Think I will take this to my GP and ask for a referral back to the Orthopaedic Surgeon. He is very careful. Didn't want to operate on my torn meniscus due to my immune system situation so we agreed i would lose weight and exercise all of which helped at the time. I am a bit heavier again and need to build up the leg muscles again now so it could just be due to being unfit that the pain is returning.

Re the back pain I will mention it to the GP. When I asked him after he did a Urine test and found a slight trace of blood if I should go to a specialist he seemed not to be concerned. But at that stage I didn't have any pain or other symptoms. Just looked up PCP we call them GP here in Australia :) was trying to figure out what kind of specialist that was.

[ingemlb]

Definitely get the knee pain checked out. I had stinging pain and went to Doc's but of course it didn't hurt when there. Two days later in emergency they did an ultrasound and found a clot just above the knee. Just so you know for being part of the Wegener's club you also receive a 23% greater chance of clots then the average bear.
Dale

Thanks Dale. TOTALLY forgot about clots. I have had this pain for several weeks. Would that not have gotten a whole lot worse if it was a clot? And it's not above the knee it is right behind it. But you are right. Best not to take any chances. When I think of all the X-ray's they did at the hospital I must be ticking with radiation by now :(

[MikeG-2012]

When I think of all the X-ray's they did at the hospital I must be ticking with radiation by now :(

I agree!

But, the upside is that with the radiation glow, you don't have to carry a torch (flashlight for us over here) to the loo at night! LOL!

:flapper::biggrin1::rolleyes1:

[Lilly]

Hi Inge, I have also been having pain behind my knee, I have a total knee replacement on the right one, because I had surg to remove cartlidge floating around, and they did arthoscopic surg to remove it. That should have been the end of it, but it was just the beginning. It kept swelling, I had it drained every 2 weeks, it would swell like a grapefruit. The dr thought it was because he missed some cartlidge, so we did the same surg. And the swelling started again, then my meniscus began tearing. Dr thought he may have missed this from the beginning, my knee just started swelling so often, I was known by my first name to everyone in the office. Each draining contained more and more blood, and the next xray showed my minuscus just getting worse. By this time, I had a brace on my knee and walking with a cane. My knee totally confused my dr. And he was one of the best. I lived in Tuscaloosa, Al. and he was the Orthopedic for the football players for the "Roll Tide" football players. He was pretty popular among the best of the best there. So he was gonna "Fix Me", come hell or high water! Well, He did a total meniscus replacement, with a cadaver meniscus. So as I was healing, It began swelling again. I went to see him, and he was not smiling. He was pretty tired of seeing my face! Or should I say my knee! I knew something was wrong. I told him, its not healing, I can tell. It does not feel right. So they did an MRI. I returned the next week for the results, he came in, read the report and said....."No Way, this does not happen, the meniscus never comes unattached after surg. It is too strongly sewn in there"...... So he immediately pulled up the MRI on the computer in the room, and his face dropped. His work had failed, the meniscus was floating freely and my knee cartlidge was just "going away". He looked at me, and said....Mrs.Brantley, I don't know what to say. This has never ever happened to me, nor have I EVER SEEN anything like this. Your knee is turning to jelly. I just cannot do anything else. I am sorry. Im sending you to a buddy of mine, the best of the best at UAB, you need a total knee replacement, but I don't feel I want to do it. So by this time, I was walking with a walker, and I went to UAB. The dr came in, put me on the table, asked me to lift my leg, as I tried it trembled slightly, and I lifted it about an inch, in intense pain, and he simply said. Can u come back Tues for a total knee replacement? I said yes, but I asked him if it would heal? He felt it would, but he said my entire ordeal with the other surgeries was my wegeners, eating my cartlidge after every surgery. My body just eats cartlidge, so we needed to get it all out. Surg went well, I recovered beautifully and have been fine ever since. But now, 4 years later, my left knee (not the one with replacement, my REAL one) is hurting behind my knee, an aching pain. It also is doing just what my other knee was doing before my first surg. I know I have floating cartlidge. I can feel it. I feel the pain behind my knee is also from the issues from knee damage from some of the athletics I did years back. But do you think I am going to let a dr touch that knee? No No No!!!!! Lol. Not unless it becomes an issue where I cannot walk on it. I am leaving it ALONE!!!! But the pain behind my knee is coming through the pain meds I have to take for my face (sinuses are gone,) so I know if I feel that knee pain through morphine, it is pretty bad. I have thought about having an MRI just to see whats going on. But I don't want to know unless I absolutely have to. I told you my story because, although we are all different, I think its important to make decisions based on having as much information as possible. What I went through would be something you could tell your dr if he suggests surg, even arthoscopic. I hope your pain is not related to wegeners, and I worry about blood clots too!! We sure have a lot to worry about, don't we? I wish I knew what was going on INSIDE my body. Wegeners is a mean disease. We just have to hang tough. Listen to our bodies. And personally, I pray a lot. I pray for peace, so I don't dwell on my disease, but stay extremely aware of it. I get extremely tired after yard work or a whole day out, running errands, in and out of the car, walking a lot, and I just take lots of "power naps", and my friends and family are all aware of this. Often drive me places because of the meds, they sometimes make me tired on top of the wegeners. But I am enjoying life and I hope you are too. That knee could be wegeners flare, or just simply floating cartlidge. I would get it checked out just for your peace of mind. I hope you are feeling better, and possibly, whatever it is could take care of itself. I wish you the best, and look forward to knowing how it turns out.....Take care! Lilly

[ingemlb]

Hi Lily. Thank you so much for sharing your experience. I am shocked that Wegener's attacks the Meniscus and cartilage in the knee :( What doesn't it devour? I am now wondering if that's what is behind my torn meniscus. If yes then I am ultra lucky it somehow settled again a few years ago.

Looks like I can't afford to ignore any kind of pain now. The pain in the middle/side of the back got worse too so I need that looked into. What a horrible experience for you. Luckily my orthopaedic surgeon already didm't want to operate last time I saw him due to my immune system status. So I know he is ultra careful.

The other issue I need to keep an eye on is Bactrim DS / Methodextrose interactions. The pain in the back I think only started this week when I started on Bactrim but I need to check my notes. The knee pain has been there for weeks. I was thinking it was unrelated as it seemed a constant mild pain but again yesterday that too got a bit worse.

Then right now there is the prednisolone withdrawal on top. I dropped 10mg a few days ago so maybe that is why yesterday the grumblings became a bit louder.

Oh well I already have 2 appointments this week. Opthalmologist and ENT specialist so better book in whith the GP (PCG).

[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! :thumbsup:

[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.