Does any one have joint pain / arthritis in some joints? I've read this as a symptom of WG, but never had any real problems with joint pain myself personally.
I've got an inflammed tendon in my arm, but it's not getting any better. Am seeing Rheumy next week, so will ask him about it then.
I have had a diagnosis of WG since I was 14 years old in 1995.
I've had lung, and kidney involvement, subglottic stenosis, optic neuritis, cyclic neutropenia, and inflammation of the vagus nerve.
I'm allergic to Cyclophosphamide, and currently rely on Ritixumab and prednisalone.
Am a typical Weggie in denial, but have a wonderfully supportive family (and friends - you guys), who help pick me up each time I fall. xx
Hey there. Yes, this was one of my primary symptoms prior to diagnosis. It was officially called viral arthritis and was mainly in my legs. Now I get joint pain if I'm run down but nothing near what it was 'back then'.
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For me the joint pain is horrible, although it was not one of the initial symptoms. The pain is mainly in my knees and feet (to the point where even walking becomes very difficult) as well as elbows, wrists and hands. Also the discoloration and numbness of fingers and toes which also causes a severe burning sensation at times.
I am currently on 60mg of Pred daily for the pain, it seemed to keep it in check for a few eeks, but it's getting worse again.
My very first symptom of Wegs was Achilles tendon pain. I had fallen on the ice and we thought it was just tendinitis. It wasn't terrible pain, just didn't respond to normal treatment. Nagging injury that stopped me from hiking. Six months later I woke up with severe joint pain in one finger joint-- as if it had been crushed. Over the course of the next few months it hopped joint to joint, increasing in severity and in the number of joints affected at once. I was completely crippled with pain for months before getting dx'ed.
Even though it was much better since starting treatment, it persisted for 4 years. It finally eased up about 7 months ago, when my first rtx treatment kicked in. It's been an indication to me that the Wegs was active until rtx got it under control.
JUMPING JOINT PAIN ALICE !!!!
Ha, Sangye your experience was much like mine. Joint pain wasn't the first problem I had (sinus trouble was) but it arrived a short time later and was pretty bad. I even had joints swell up visibly. It was my first experience of how rapidly Wegener's symptoms can move around in the body. For a couple of days my elbow would be in pain and feel like I was crippled for life and then it would completely go away and something else would hurt. One problem this caused me was that in my natural optimism I continually thought I was getting better. I wasn't.
I would think "Oh, that treatment on that elbow worked" . It didn't. Wegener's was moving around my body, coming and going like a ghostly shape shifter that completely confused my sense of what was wrong with me and how to take care of myself.
EXACTLY how it went for me! Here we thought we were dealing with an ordinary criminal, but Wegs is a Ninja.
Exactly my experience. It was my first symptom. I would go to work and coworkers would ask "where today?" Sometime it was left elbow and right big toe. I was able to get through the day at work and then when I got home it was all over. I collapsed on the sofa and cried. ( I am not a crier except when on lot of prednisone) I took a vicadan and went to bed as soon as I got home and got up the next day and did it all over again. Finally, I got an appointment wiht a Rheumatologist. They called it polymyalgia rheumatica and put me on prednisone. This ony masked the other syptoms. Eventually I got a vasculitis rash that led to diagnosis. Now I have to stay on a small dose of prednisone to keep them away.
stikker1
I asked several doctors what kind of illness or problem could move around like that. i would go to bed with a shoulder ache and arm I couldn't move and wake up with that pain gone but a knee that was in pain to the degree I couldn't walk with out a serious limp. No doctor had a clue. It seems now that if it is so common among us that physicians should be better able to recognize this symptom for what is is?Originally Posted by me2
I may as well add my voice to the general clamour.
Yes, joint pain was one of my primary symptoms and was horrible. I would lay in bed thinking that if I just moved my leg a bit, or my arm a bit I would find a comfortable position, but there never was one.
Unfortunately migratory polyarthralgia (roving joint pains) isn't at all exclusive to Wegs. There are a huge number of diseases that can cause the exact same symptoms. Many of them are very difficult to diagnose because the tests are inaccurate. The lab tests for many autoimmune diseases are not accurate--lots of false (+) and (-).
To make matters worse, this type of joint pain can be due to other imbalances/interference, not just disease. Things like heavy-metal toxicity, mold exposure, food sensitivities, nutrient deficiencies or excesses, are just a few of the other causes.
While it was certainly an unhappy event, the fact that my lungs finally hemorrhaged is the only way I could have gotten dx'ed. I had nothing but the joint pain otherwise.
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