4-2-15 Time for a check-up with genetics. We are noticing some overall weakness with Avery. She will need to visit cardiology, pulmonology, and ophthalmology. Dr. Stockton also talked about her antibody levels. Her levels are at 102,000 and this is high for her. She is building antibodies towards the Lumizyme, the only drug avail. for treatment of Pompe disease. This is NOT good. Plan of action...Immunosuppression. This is the one thing we feared all along. Ok, she has pompe but was doing fine with the Myozyme and later Lumizyme so we just never thought it would come to this. Immunosuppression in this situation will consist of several drugs: Rituximab, Velcade, Methotrexate and IVIG. Each drug has a different job. Needless to say we were sick about this and had no idea what we were in for. A couple links to check out or google immunosuppression in pompe patients
http://quest.mda.org/news/immunosuppression-induces-tolerance-enzyme-treatment-pompe-disease
http://www.cell.com/ajhg/abstract/S0002-9297(07)63878-6?cc=y=
No comments:
Post a Comment