…to get all the known autoinflammatory genes tested that are possible to be tested in a commercial lab panel for some patients. But Whole Exome (WES) or Whole Genome (WGS) sequencing or other big genetic testing methods may also be more effective and beneficial for some patients. but have other distinct features, such as PRAAS/CANDLE. At this time, only PSMB8 and POMP are in some of these panels on the chart above, so if PRAAS is considered, expand…
…r should decide on what is best for you or your child. 6. Repeat the Blood Tests These tests should be repeated several times to see if there is a pattern. They should be done both during flares and when not in flares to monitor changes. Some doctors will want these tests done at the start of a flare or fever and symptoms, then repeated–sometimes weekly, or even 2-3 times a week for several weeks to get a good picture of what is happening internal…
…ough not all patients have a complete response to these treatments. HIDS researchers recommend that after prednisone, Il-1 inhibitors are the first biological treatments to try in HIDS. In some, Kineret has been prescribed “off-label” for daily use or for “on-demand use.” For patients with less frequent flares, doctors may often prescribe off-label Kineret on-demand for use during flares only. Some doctors prescribe Kineret off-label for daily inj…
