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View Full Version : Are the leg pains flares??



stikker
01-08-2011, 10:24 AM
They tell me that I'm in remission but when they try to lower my pred all the pains come back. How can that be remission??
I now have the aches and pains coming back on the same dose(7.5) of pred. that I have been on for a while. Is it a flare?? or is it the usual pain I get?? I am so confused.
I am also losing hearing in my left ear which had no loss before. Again, if I'm in remission, whyam I still losing hearing?
I have a great dr. but I have been waiting for him to review my last hearing test for 2 weeks. I am losing patience. I don't really have any choice but to wait. Where else could I go. He is the best. I hate being sick. You lose control of everything. You are at their mercy. I am thinking about upping my pred to 10 just to take the edge off the pain. Patient heal thyself!!!
Sorry. This turned into a rant.
stikker

pberggren1
01-08-2011, 10:31 AM
Hey stikker:

This sounds like a flare to me. And even though you think your doc is great from what you said here he sounds like he is out of his league. I don't know where you live but getting to a Vasculitis Clinic is paramount, or at the very least having your doc consult with one of the Wegs Specialists listed with the VF. To preserve your hearing you need to see a Wegs ENT right away. But if you can't then you should at least see your local ENT within the next day or so.

stikker
01-08-2011, 10:37 AM
He is at a vasculitis center. A very good one. That's why I don't have any choice but to wait. He is a really good dr. I hate that fact!
My ENT is useless. I don't know of a Wegeners ENT. Is there such a thing?

jola57
01-08-2011, 11:24 AM
stikker, I have been tapering slowly from 60mg pred to 4mg over the past year. I have stopped at 4mg since it seems that that is my "maintenance" level. When I go lower I get the aches and pains you are talking about. I tried 4 times now to go down to 3 and go back to 4 when it becomes too much. Remission, hmmm, I know that I am a lot, and I mean a lot, better than at the beginning 4 years ago, but in remission. My feet are bad, ears are ringing, can't hear well in my left, do I need to go on? Yet all in all I consider my self lucky, I walk with a cane long distance, but putter at work and home just fine. I can walk up a flight of stairs and puff just a little. So if this is remission, so be it. I know I will never be the same again and this is my new normal. Hope this helps.

stikker
01-08-2011, 11:37 AM
I Just heard from him. He apologized. I feel better.
However, it is a flare. I am increasing cellcept and going on 40 mg pred for 7-10 days. YUCK. Hopefully it will only be 7-10.
stikker

Sangye
01-08-2011, 12:20 PM
I'm so glad you heard back from him. When you said you were losing your hearing I got pretty upset. That has to be treated with pred immediately to prevent it from becoming permanent.

Yes, there are Wegs ENTs. They are at the vasculitis centers. Your doc should be referring you to one. Dr Seo doesn't hesitate to send me to the Wegs ENT at JHU whenever I have issues in those areas.

Jack
01-08-2011, 09:31 PM
I was diagnosed 25 years ago and have spent much of that time in a state that I would call remission since I have not been troubled by Wegener's symptoms. However, I can't get below 10mg of Pred or the ear and foot pain becomes too bad so now I just have all the steroid side effects to deal with instead. I'm afraid that sometimes there are just no easy options. :(