Mom diagnosed with WEGENERS(vancouver BC)

[Sunny Days]

Hi Everyone,

My mom was diagnosed with wegeners a few months ago. She was put on cytoxan/prednisone and things were looking good. Now just a few months later she is back in the hospital. My mom is extremely weak and can barely walk. She often zones out and looks lost. She has extreme joint pain and now her liver is inflamed. The worst part is the doctors have no idea what's wrong. I'm just looking for some thoughts or ideas.

Looking for
Sunny Days

[andrew]

Has her medication been changed/reduced? Is she under the care of a WG specialist? From what you say it sounds like the medication may not be holding the WG at bay and may need reviewing.

[Jack]

As above, she must see a vasculitis specialist with experience in treating Wegs. It sounds like the current medication is not working and she urgently needs to try an alternative or a dose change.

[Sunny Days]

Thanks for the reply. She is being seen by a vasculitis specialist. The problem in Vancouver is we only have one lady who deals with this stuff and she is away for the holidays. We have taken her to the hospital and the doctors have no idea what wegeners is. The vasculitis specialist will be back on Jan 4th. I'm just not sure she will be okay until then.

[Sangye]

I agree with Andrew and Jack. I'm concerned about the "zoning out" part as well. Is she aware during that time? Is it just profound fatigue or do you sense that something more is going on? How old is she? In addition to getting a Wegs specialist involved asap, you need to ask for a neuro consult immediately. If they hesitate, demand one.

[Sunny Days]

Sangye,
When she zones out it's like she is a million miles away. She will awnser my questions but she is somewhere else. She also gets extremely exhaused after walking two steps. A few weeks ago she was fine. Although they did up her cytoxan by one pill. Oh and my mom is in her early 60's.
Do you really think we need a neuro consult?

[Sangye]

You need a neuro consult urgently. Sudden onset severe exhaustion and changes in mental status are red flags. It will be more difficult to get a neurologist in on the weekend. If it were me, I'd start demanding one now.

[JanW]

Agree with Sangye. It's the change in mental status that has me concerned. WG can affect anywhere, including the central nervous system.

[elephant]

Is she on any other medicines? Antidepressants? Pain pills? Sleeping pills? Any changes in speech? She might need a MRI of the brain, so that is why she really needs a neurologist. Is she getting physical therapy at the hospital?