Sister just diagnosed in another state and need info

[little sister]

Hi, I'm really glad I found this site. My sister was diagnosed in June and has significant kidney impairment. Some days she gets dialysis, plasmapheresis, steroids, and or blood transfusions and some days she doesn't. She has many different doctors including a nephrologist, rheumatologist, hematologist/oncologist and I'm afraid that she is falling through the cracks. They keep delaying the start of her cytoxan treatment. Everything I read refers to the urgency of beginning treatment quickly. Her kidneys are functioning at 12%.
She lives in another state and I'm thinking of making a list of questions and maybe her husband can ask one of her doctors.
I could use help with my list. I'm thinking along the lines of:
why haven't they started the cytoxan? Is she not strong enough? If she isn't strong enough, what are the criteria for beginning cytoxan?
How is it decided if and when she receives dialysis, plasmapheresis, blood transfusions, and or steroids?
Why did she have a severe reaction to her blood transfusion (put her in the cardiac unit)?
Are there any other questions I should be asking?
Or maybe some of this is not unusual?
Any help you can give will be appreciated.

[drz]

Hi, I'm really glad I found this site. My sister was diagnosed in June and has significant kidney impairment. Some days she gets dialysis, plasmapheresis, steroids, and or blood transfusions and some days she doesn't. She has many different doctors including a nephrologist, rheumatologist, hematologist/oncologist and I'm afraid that she is falling through the cracks. They keep delaying the start of her cytoxan treatment. Everything I read refers to the urgency of beginning treatment quickly. Her kidneys are functioning at 12%.
She lives in another state and I'm thinking of making a list of questions and maybe her husband can ask one of her doctors.
I could use help with my list. I'm thinking along the lines of:
why haven't they started the cytoxan? Is she not strong enough? If she isn't strong enough, what are the criteria for beginning cytoxan?
How is it decided if and when she receives dialysis, plasmapheresis, blood transfusions, and or steroids?
Why did she have a severe reaction to her blood transfusion (put her in the cardiac unit)?
Are there any other questions I should be asking?
Or maybe some of this is not unusual?
Any help you can give will be appreciated.

Does she have an on site advocate or health care director who can ask the physicians these questions. It can be a full time job for the person to try keep up with the treatment plans and issues doctors are encountering in her treatment.

Each specialist will look at her case from their own perspective but there has to be one physician who makes the decision about what will be done from their recommendations. This doctor will tell you the issues and over all progress or state of her health. Each specialist can expound on their concerns and recommendations which will often conflict. A good case manager is necessary to keep everyone on same page and to keep patient informed if possible or to make the decisions for her since she is probably not in best position to do so if she is very sick.

I attribute my survival to my health care director who stayed on site for several weeks during my worst time and most serious treatments. She had many meetings with various doctors to hash out various issues and to try build consensus about my treatment .

[Jaha]

In your list of docs, I didn't see a wegeners specialist. Does she see one? if she does have one ask the main or lead doctor to consult with a large vasculitis center that has one. It is really important to start the induction of tx for wegener's. I guess you do need to find out why that hasn't been considered starting yet. Best wishes to your sister. Please let us know how things are going.

[Debbie C]

You are right ,if she was diagnosed in June she should be on some sort of treatment. Jana was correct about the dr.You can go to the Vasculitsis Foundation website and see if there is a dr close to her with wg. experience. Where does she live ?

[annekat]

Welcome to the forum and thanks for asking these questions on your sister's behalf. You did mention she has a rheumatologist, who would normally be the lead doctor IF that person has sufficient WG experience. Not all rheumatologists do. And the VF resource for experienced doctors, many at world reknown vasculitis centers, is here: VF Medical Consultants . A lot might depend on where she lives and whether she has access to docs of that caliber. They are willing to consult with less experienced doc, and I think it is free of charge. There is also a page under Support for a list of New Specialists. The Find a Doctor link will just take you to the College of Rheumatology page and might take you to docs with less experience.

In any case, it would seem that your sister needs to be started on a good immunosuppressant for more severe cases, along with the prednisone, since she has kidney involvement. Cytoxan is the simplist, quickest choice, it works well, and any doc can prescribe it, and insurance will cover it. Rituxin (RTX) is the more state-of-the-art treatment but more involved to get approved and paid for, etc., as it is very expensive. But that would be a good choice, too, either for starters or for later. But she does need something! I don't know a thing about kidney involvement, however, or whether the complications of that would affect getting her started on the standard meds right away.

Best of luck to you both, and keep us posted!

[drz]

why haven't they started the cytoxan? Is she not strong enough? If she isn't strong enough, what are the criteria for beginning cytoxan?
How is it decided if and when she receives dialysis, plasmapheresis, blood transfusions, and or steroids?
Why did she have a severe reaction to her blood transfusion (put her in the cardiac unit)?
Are there any other questions I should be asking?
Or maybe some of this is not unusual?
Any help you can give will be appreciated.

Her treating doctors can best answer these questions. She may well be too ill to survive treatment of Cytoxan at this time given the issues you describe like loss of kidney function, and severe reaction to blood transfusions. She might also be very anemic if she needs blood transfusions. The steroids and plasma exchange may be best treatment options now and may be only safe options if she can NOT handle blood transfusions but getting a consultation from some Weg expert is your best option to explore available treatment options for her. My treating team consulted with an expert at Mayo who is listed on the Vasculitis foundation web site.