My Mother has WG, it's getting worse…and nobody cares!

[Jaha]

I'm sorry that your Mom is not getting any better from the Rtx treatments. Is she on a large dose of Preds? I hope you decided to take her to a ER, as there could be a number of things happening. She could also be having a Pred crisis, in which could effect her mentally. I wish you and you Mom all the best in getting her some help immediately. Please keep us up to date on her care.

[annekat]

I'm sorry that your Mom is not getting any better from the Rtx treatments. Is she on a large dose of Preds? I hope you decided to take her to a ER, as there could be a number of things happening. She could also be having a Pred crisis, in which could effect her mentally. I wish you and you Mom all the best in getting her some help immediately. Please keep us up to date on her care.

True what Jana says. Most of us handle pred OK, but some do not, and it can indeed cause negative reactions mentally and emotionally. Or so I have read on here from time to time! Best wishes to you and your mom. She is the same age as I am.

[drz]

Hi Maurica,

From what I've read, your Mom needs a "lead physician" to guide her treatment. Dr Seo usually gets rave reviews on here, but there are other options available at JH and NIH. Here's link to Vasculitis Foundation » VF Medical Consultants. Before your appointment, you should develop a history of her wegs experience to date - symptoms, meds, test results, summaries of doctor visits, and her overall medical history. This will give a wegs specialist something to work with. It sounds like your Mom really needs a wegs specialist. I hope you can get her to one soon.

Keep us posted. Good luck!!

I agree with trying Hopkins again with first specialist she can get in to see. Maybe Seo had a bad day when she saw him. Limited only means it wasn't in the kidneys or lungs at that time, and has nothing to do with how serious her disease may be. Her disappearing nasal cartilage and nose bleeds warrants some aggressive treatment by some one who is invested in her treatment, and hopefully knows what they are doing for treatment.