That could be prednisone or Wegeners flaring. I know that some Wegeners patients had symptoms of soft tissue pain, I am one of them. I use to get the sides of my arms would really hurt! It was like having the flu. The joint pain is really Wegener's flare/active. That is great that you are walking.
Wonderful!! Thank you so much. And..since I am a puteridiot, took me 2 years to find this group by chance, I would really appreciate th e-mailaddress. Have as good a day as I will now.
Elephant- what did you find worked for the soft tissue/muscle/joint pain? I can't take any NSAIDs because the doc wants to make sure that wasn't causing the liver enzyme spike with the mtx on board, and tylenol takes the edge off, but nothing removes the pain completely. It's worst in the morning, better through the midpart of the day and then bad again at night. Right now I would say this is definitely the only symptom that my WG is active.
I suffer from lots of pain mainly in my feet, ankles and lower leg. In my case, after extensive investigation by various specialists it would seem to be caused by long term steroid use. I also have severe muscle wasting and osteoporosis which don't help.
I usually take a couple of Paracetamol to help me get going in the mornings when I can hardly walk.
Actually most of my muscle pain and all my joint pain is gone right now. The prednisone, cyclosporine ( WG med), cellcept and bactrim helped. Jan like you stated before you know that your WG is active so I have a feeling that is why. Once you get the therapeutic dose for the WG it should go away. Many times it is trial and error..
Mine never went away until I was back on pred. Not sure if it's just masking it, though. It's further proof to me that I was not in remission at all. The joint pain was exactly like it was pre-diagnosis, just not as widespread on a given day. It kept me from doing anything.
The pain I now experience is totally different to the joint pain I experienced with Wegener's. That was the classical rheumatic pain that is hard to escape from. This is more general and hurts most when I walk about.
Upon further discussion with my husband, I think this is really more muscle pain rather than joint. Nothing in knees, hips -- if there's any boney pain at all it's mostly in my foot and ankle that is affected. What I have is pain in lats and pecs, like you would get from a hard work out with weights. I can also experience pain in my shoulder and neck muscles. None of this is daily or constant -- it comes and goes and isn't completely relieved by ultracet or tylenol arthitis (can't take NSAIDs because of mtx). Hard to know how much of this is from walking for months with a pretty serious limp due to the ankle, and how much is due to the WG. ENT says most of my nasal symptoms are gone, and I don't even have the crusting anymore -- it will be interesting to see how quickly the SS starts giving me trouble again, although that doesn't track virulent disease either.
I have an accupunturist that I was seeing for my feet (haven't been for about a month though, post-surgery), but no chiropractor. The ones around here I've always heard are rather agressive about 'chiro cures everything' and selling holistic products, so I will admit I have been biased against it. It's something I would be open to trying if I could find a good one -- and if that person just focused on my frame and not any other medical conditions.
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