When the rheumy says you don't have Wegeners anymore but you still feel awful!!

[Carol]

At my recent visit to my rheumatologitst he leant back in the chair and said your tests show that you do not have Wegeners anymore! I then asked "well how come I feel so awful so often and my legs wobble and my feet are still numb". He then said "well that must be something else'. I think I'll bounce it all off my GP in the early New Year.
Other Wegeners - has this happened to you??????. At what point do they say you are well and how can that be when you are still feeling awful most of the time.

[andrew]

I didn't think it was possible not to have Wegener's anymore. You can just achieve remission. I think your Rheumy may have been speaking out of ...um....another part of his body

What was he basing his assertion on? ANCA? If so, it's possible to have an ok ANCA reading and still have WG. Not common, but possible.

It is also possible that you may be in remission but have associated issues caused by the WG. It sounds like he wasn't very clear huh?

Definitely see your GP as soon as you can.

[Sangye]

Cured of Wegener's??? Never heard of that. Like Andrew, I wonder if he's just looking at the ANCA, CRP, etc... and doesn't understand what remission means. Are there any other rheums near you? You certainly need to find out why your feet are numb. Wegs can affect the central nervous system or peripheral nerves.

At my last visit to Johns Hopkins Vasculitis Center, Dr Seo said he isn't going to keep checking my ANCA the way Mayo used to. Despite getting better (albeit slowly) over the past 2.5 years, my ANCA continues to go through the roof. I think it's up to 1:4,000. The PR3 is still out of range, never budged. He said the ANCA is highly unreliable for most people. If it is reliable for someone (ie, it goes down as the symptoms abate), then it's a great test for that person. Otherwise, he said it stinks.

[Jack]

Have to agree with the above posts. As far as I'm aware, you can't "not have it", you just get remission if you are lucky. Also, none of the blood tests are reliable indicators of Wegener's activity, the only relevant tests are biopsies, but more importantly, the way you feel. My own specialists only use the results to monitor my wellbeing, kidney function, blood count etc.

[Rodger]

My 9 months or so of what my rheumy referred to as clinical remission would still have days of feeling like crap. I always could count on foot pain or shoulder pain at least a few days a week.

I am one of those patients where ANCA is a strong indicator. My rheumy has said as Sangye did, it isn't a good indicator for all. As soon as it started to rise in the summer, I felt the old physical effects as well gain my new ear symptoms.

I think doctors use remission loosely in a number of gradations that they do not always explain and can vary by patient. My rheumy aims for the day with no meds whatsoever, but will still refer to medically maintained remission.

[Gwenllian]

Hello

I've been ANCA negative for about 18 months now, and I can honestly say, that I have felt pretty bad for most of that.

Recently, I lost the hearing in my left ear, my chest was bad, and I felt (feel) like I have flu most of the time. Luckily, my Rheum doctor treats me on 'clinical symptoms' rather than what my bloods say, and although i'm ANCA negative, I respond well to treatment, and that in itself says a lot.

There is no CURE for Wegeners, just a state of remission.

xx