There are a few cases of variant CAPS or MWS that have had symptoms start in their 20's, but I think you may also want to look into TRAPS too. Most patients with CAPS do not experience bruising with the rashes, but many with TRAPS can have deep pain that is below where the rash can be, and the rash can migrate. People often have fevers and can have symptom flare ups for weeks, then it can go down.
Hearing loss, and knee pain, and weekly flares do make it sound more like MWS or a variant of it may be a possibility. IF you would like more information, please take a look at our website and the downlaodable guidebook about CAPS that has a chart in the center spread that compares a few of these autoinflammatory diseases, including CAPS, TRAPS, FMF and HIDS at this link:
If there is anything that we can do for you, please let us know! Lesley, I also hope that you are getting some answers too! I will be out of town for a few weeks in July, but will be checking in on emails.
Best of luck!
Karen Durrant-The NOMID Alliance