Help!

My mom was diagnosed with Wegeners about 2 months ago. She was responding well to treatment. However, I noticed that she would forget little things or say things wrong. Nothing too alarming but just one week ago she literally drove from her house and got lost! She parked her car, got out and wandered off. Thanks to friends, family, police and search and rescue she was found 36 hours later. She had fallen off of a cliff and couldn't move. She does not remember any of this. Currently she is in the hospital recovering from a rare form of pneumonia. Brain scans are negative and they are continuing to give her prednisone and cytoxan for Wegners. I am so relieved she was found but she is still having problems with her memory. The doctors don't seem to think it is from her meds. Any help would be appreciated. Memory loss experiences? Blackouts from meds? Or is it the vasculitis??? Too many unknowns and I feel very helpless not knowing what to do next!!!

Thank you,

Deedra

6 Replies

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  • Hi Deedra,

    Was the rare type of pneumonia pneumocystis jiroveci? If it was your mum should have been on co trimoxazole to prevent her from catching it.

    Infection/ sepsis can cause delirium and lead to memory loss and cognitive problems, especially in the elderly. The effects of prednisolone on top of that probably aren't helping. Is you mum on oral Cyclophosamide as the cumulative dose of that can be higher than the IV infusions.

    Does your mum see a Consultant with good experience in treating Vasculitis, I get the impression that you have some questions about your mum's treatment/ what happened that aren't being answered.

  • Yes, she was diagnosed with that type of pneumonia. We aren't sure when she came down with it. She is seeing a kidney specialist because that was what was effected. I am going to have her go to someone who specializes in wegeners though. I am still concerned with her mostly with her brain functioning. The doctors don't see the confusion she is experiencing and isn't their main concern. I am very frustrated and just want to take the right steps. Thank you for replying. I appreciate any help I can get!

  • Deedra,

    I think a good start is to ask some very probing questions about the Jiroveci infection and whether your mum was given prophylactic antibiotics to prevent it as recommended by the evidence based clinical guidelines for treating GPA. I would ask if she is receiving MESNA to protect her bladder as well.

    I would stress how worried you are about her cognitive function and get them to document this and other concerns in your mum's notes ( it then provides " evidence " that you raised concerns ). Ask them if your mum has delirium and how they propose to monitor her.

    Making the Consultant aware that you have concerns and want answers is hard but can pay off.

    You are welcome to phone or e mail the VUK helpline, my e mail address is lynn@vasculitis.org.uk if you would like to discuss anything further.

    Best wishes

    Lynn

  • I also had a few problems with my memory , when I was having chemo, but nothing like your mothers. I am still forgetting silly little things. Hope that they get it sorted out soon regards lorraine

  • Keyes answer is exactly the correct approach here I think, my Mum had exactly the same vasculitis and pcp pneumonia with delirium.

    One extra point, I don't want to scare you but this happened to us, my Mum in her confusion told the itu nurse she had had enough of pipes etc. The nurse jumped on this as a request to withdraw treatment and a consultant tested my mums ability to ask for treatment to be withdrawn despite my frantic assertion that she would never knowingly do this. Thankfully she was too delirious to pass the test but I warn you, they ignored what her family had to say! Get your mum to have her notes updated accordingly.

    My best wishes, make sure mum has the antibiotics mentioned as a preventative while she is being treated with cyclophosomide and or prednisolone as my mum now is.

  • Thank you for your guidance. I proceeded to ask those questions and, nooooo, she was not given any prophylactic antibiotics!!!😡I asked about Mesna as well. She is now on a prophylactic antibiotic and mesna thanks to you.

    I have another huge question for you....could you give me an idea of a 'typical' regimen cycle of cytoxan and prednisone. I'm curious about the milligrams and how long she should be taking both. Or a general idea. We finally got an appointment with a rheumatologist but not for a couple of more weeks and she is still in this damn hospitals with incompetent doctors. I'm worried more damage is being done than good.

    Just an FYI...she is taking tablets orally daily. Her kidneys are functioning at a 1.9. She started meds about 3 months ago.

    Thank you!!!

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