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ldayfrantz
03-23-2017, 04:38 AM
My mother was diagnosed with Stage 4 Wegs in May 2016. She did Cytoxin, Prednisone, etc and her doctor told her she could not do Cytoxin anymore and put her on Cellcept. She has been on it now since about September. Her disease has never gotten better and dialysis is starting to wear her down. She has lost 43 pounds since May and now her memory is fading and confusion is getting worse every day. Her dr says it could be the cellcept. She (my Mom) said her body is shutting down. Does anyone know if she goes off the cellcept if her mind will improve any? I just want her remaining time to be as memorable for her as possible. Thanks!

Pete
03-23-2017, 06:02 AM
You may want to ask your Mom's doc to consult with or refer her to a Vasculitis expert: Vasculitis Foundation » VF Medical Consultants (http://m.vasculitisfoundation.org/?task=get&ihash=ccd56128ea&url=http%3A%2F%2Fwww.vasculitisfoundation.org%2Fmc m_resources%2Fmedical-consultants%2F)

There are other drugs that are effective treatments for wegs such as rituximab, methotrexate, and azathioprine. Maybe she would respond better to one of these.

I am wondering if your Mom's memory issue is related to insufficient nutrition.

I was diagnosed in 2011 at age 65. I was on cytoxan for 16 months, and I, like your Mom, can't take it again. It did get the disease under control.

I've never heard of "stage 4" wegs. That makes me concerned about her doc's expertise and experience treating wegs. It's a question you may want to raise. If her doc treats only a few wegs patients, I think you should definitely ask for a consult or referral.

Good luck!

JeanMarie
03-23-2017, 08:22 AM
I'm with Pete on this. A second opinion is called for & I've never heard of "stage 4" either. Also, I took a quick search for cellcept & didn't find anything about mental confusion. Of course that doesn't necessarily mean it can't cause mental problems.

Good luck & I hope she is better soon!

Alias
03-23-2017, 09:36 AM
I am only guessing, but when you say "stage 4", possibly you are referring to her GPA related kidney disease, since you mention she is on dialysis. GPA is not referred to in stages that way.

drz
03-23-2017, 12:19 PM
I am only guessing, but when you say "stage 4", possibly you are referring to her GPA related kidney disease, since you mention she is on dialysis. GPA is not referred to in stages that way.
But kidney disease is described by stages and stage four kidney disease could create cognitive dysfunction see below:
Symptoms of stage 4 kidney disease


Symptoms that are experienced in stage 4 include:


Fatigue
Fluid retention, swelling (edema) of extremities and shortness of breath
Urination changes (foamy; dark orange, brown, tea-colored or red if it contains blood; and urinating more or less than normal)
Kidney pain felt in their back
Sleep problemsdue to muscle cramps or restless legs
Nausea and/or vomiting
Taste changesa metallic taste in the mouth
Bad breath due to urea buildup in the blood
Loss of appetite: People may not feel like eating, and some people report having a metallic taste in their mouth or bad breath.
Difficulty in concentrating: Having trouble doing everyday things such as balancing a checkbook or focusing on reading the newspaper can occur.
Nerve problems: Numbness or tingling in the toes or fingers is a symptom of CKD.

Her nephrologist should know this or maybe you need a new one?

https://www.davita.com/kidney-disease/overview/stages-of-kidney-disease/stage-4-of-chronic-kidney-disease/e/4751

luan22
12-02-2017, 09:49 PM
thanks for share !!