Thanks Sangye, I will bring it up with my Dr. on my appointment this week. Also thanks to all that submitted inputs on my question.
Ken
I have been searching the site trying to find out about the foot pain I have been having. Since my diagnosis no one has ever linked my extreme foot pain to my WG. The pain is centered, on both feet, right at the base of my 2nd and 3rd toes and they swell up so badly that my toes actually make a V shape. This problem went away when I was first diagnosed and put on 60 mg of Prednisone. I am on a weekly dose of MTX 20 mg. and the pain in both feet is so bad right now I can barely walk. Why isn't this a generally know symptom of WG? I have just learned it may be connected after Googling foot pain and eventually reading that some WG patients experience this. I am having some other flare symptoms as well (swelling in my fingers and nodules in my fingertips and elbows). As many of know, and would probably agree, going back on Prednisone is a last ditch course of action for me because of the horrible side-effects. It seems like the side-effects come much quicker now than when I first went on the drug back in 2005. Maybe your body just doesn't tolerate it as well after being on and off it over the years. Anyway, let me know more about the foot pain issue and if what I described is what any of you experience.
Foot pain is VERY common with Wegs. We did a thread on it some time ago. Lots of people said they'd had it at some point, and that it was relieved by Wegs treatment. It was my first symptom. I can tell the Wegs is active when I feel like I'm walking on the bones of my feet. Others have described similar sensations.
Does your rheumy know about all your symptoms creeping back? Don't wait to treat it. If you catch it quickly you might not need to go back on pred at all.
Thanks so much for your quick reply. I don't see a rheumatologist, I see a pulmonologist but at my six month checkup on May 4 I will definitely bring it up to him. With the 20 mg. of MTX on board you wouldn't think I'd be having the flare so that is a concern. But, you decsribed it exactly right when you said it feels like you are walking on the bones on your feet. Maybe just a low 5 or 10 mg bump of pred would make a difference for a month. Heck, maybe it's just time for something stronger. I've been on the MTX for 3 years nonstop.
Shannon, my first question for you is: What kind of pain? The swelling you talk about sounds like edema, which s painful because of the pressure it exerts on the nerves. This is different than joint pain, though both are regularly associated with WG. (Edema usually means distressed kidneys, which is a common condition in WG, but joint pain also seems to come with the territory.) In any case, I would advise you to seek out a specialist, or at least have your pulmo consult with a specialist. In my experience, pulmos do not, unless they are really pushed, like to look at matters concerning the other organs. (I know this is a generalization, and, as such, unfair to some pulmos. Dr. Specks at the Mayo Clinic, for example, qualifies as a pulmonologist who is a genuine vasculitis expert. But the point remains that you need the best team you can get.)
Al
I agree with what Al said and wanted to add that foot and ankle edema are common signs of active Wegs even when the kidneys aren't affected. Like foot pain, Wegs docs seem to discount it as an indicator of Wegs activity.
I get a tingling more than numbness fingers and feet, sometimes up the front of my shins? Anyone else? Or am I calling tingling what you refer to as numb?
"Numbness" or "tingling", it is all neuropathy....
Al
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