My Mother has been diagnosed

[rkm001]

I admitted my Mother on 3/26/09 to the hospital. There were several doctors invovled. She had 3 pints of blood given on the next day and several routine ultrasounds, cat scans, blood tests, etc... They informed us the blood tests could take up to a week for results. They started dialysis on Saturday 3/29. Finally on Thursday of next week they recieved the last blood test result and determined she had Wegeners. I was relieved because now we knew, but had hoped for some encouraging physical recovery. She left the hospital and went to skilled care and is still there. Dialysis 3 days a week, but her appetite is nothing and she just wants to be in bed. I have requested they take a look at her blood count again for the possibility of a another blood transfusion. They have been doing blood tests every week at dialysis.
Back to the beginning, she was diagnosed with Rheumatoid arthritis in July of 2007. Was taking Methotrexate until about 10/2008 then her symptoms went away so we stopped the meds. Late november to early December she went to the doctor for a ear infection and sinusitis. The doctor said it was the worst ear infection he had ever seen in an adult. We were in and out of the doctors office for this, taking several rounds of antibiotics, until March 2009. Then finally the urgent care clinic decided to draw blood.

I would appreciate maybe a timeline for the process after starting the drugs, prednisone, cytoxan and batrim. She just does not seem any better.

[Jack]

I've heard that "worst infection I've seen" a good few times!
Wegener's presents itself as an infection that does not respond to antibiotics. This is the reason so many in the medical profession misdiagnose the illness.

Sorry to hear that your mother is not getting much better. Unfortunately, Wegener's and its progress are in no way predictable as I'm sure you have picked up from this site. Everyone here has a different set of symptoms, some getting over them quickly and others stuck with long term damage. In my case, I responded very quickly to the initial treatment (within a couple of days), but then went through years of relapse periods until it was brought fully under control. It was then only after many years that the cumulative effects forced me to retire.

The drugs you mention seem to be a pretty common starting point for Wegener's medication so no reason to believe that they won't work.

[andrew]

Welcome to the site. Your mother is definitely on the right course of meds. As Jack said, unfortunately everyone is different. When did the Cytoxan and Prednisone start? It's very common that WG makes the patient very tired. here's so much going on in your body that there's not much left for functioning on a day to day basis.

[rkm001]

She started the meds on April 6th or 7th. She will not eat and wants to sleep always. We are having to decided whether to place her in a nursing home or try to keep with the family in hopes of a decent recovery. Do you know of any one her age that has had the disease? I believe if we keep her in our homes the outcome may be better than going to a nursing home.

[coffeelover]

what is her age?

[rkm001]

She is 76. I am sure this disease will probably effect her worse because of her age. But any thoughts are greatly appreciated. Thanks

[Doug]

"worst infection I've seen"

I missed Jack's comment the first time around. As people who are more likely to catch something, it's important to remember that we also are more apt to hear the doctor say these words or a variation on the theme. When I had a shingle outbreak in 2007, my doctor's comment was, "This is the worst case of shingles I've ever seen." I work very hard at limiting my contacts with infected people, or, at least taking reasonable precautions in public because I am a weggie. People new to the forum need to remind themselves that they will feel better some day, but you still are a weggie. You still need to be mindful about catching things, because you will always be a weggie.