Just diagnosed

[drz]

Early aggressive treatment might save her kidneys. The usual would be plasmaparesis, IV Cytoxan or Rituxan, large dosage of IV steroids, antibiotics for any infections, transfusions if bleeding causes low hemoglobin, and frequent lab work and x-rays to monitor her condition.

The premier kidney doctor for Wegs seems to be Dr. Falk at UNC and he is listed on Vasculitis foundation physicians list. Get a consult from him or some other kidney doctor with Wegs experience ASAP and get treatment started.

[Beth Ann]

They started my mom on prednisone through IV just about an hour ago. We didn't get to see the doctor that adventure starts tomorrow. With her kidneys and some sinus issues and a cough (no blood) being her issues, which doctor should I have the doctors contact at Johns Hopkins in Maryland? Any suggestions and help would be greatly appreciated.

[renidrag]

Brittany: I know of a Dr. Seo there that some see from this forum, however I also think there are others there who are WG specialists. You will need to contact Rheumatology as they usually run the show. With sinus issues and possibly lung issues the Rheumy will hook you up with an ENT and Pulmonologist.
Dale

[Sangye]

Brittany, your mom's doctor can call any of the JHU docs listed on the VF link I posted. All are great. There is only one receptionist who manages all of their calls so she will direct the doctor to whoever is available.

Don't contact JHU Rheumatology. That is a general department. You want the Vasculitis Center--a separate clinic. Use the links I posted and you'll be in the right place.

[Sangye]

Brittany, I suggest you ask the docs for the specific drugs and dosages your mom is getting. Also, ask them (or the nurses) for the following labwork results:
- ESR and C-reactive Protein (CrP)-- indicators of inflammation levels
- Glomerular Filtration Rate (GFR)-- indicator of kidney function