Hello I have found this forum through the lupus UK forum and thank you to whisperit for mentioning it!
I have had lupus for nearly 20 years but MYOSITIS has always been the major problem. After an MRI and high CK i was properly diagnosed and have just started on Rituximub ... 🤞🏼🤞🏼🤞🏼 for results.
I take Hydroxychloroquine, leflunomide, prednisolone, DHEA, Celebrex the usual mix plus warfarin for APS.
When dysphagia became severe the rheumatologist acted.
It takes a couple of bounces to stand up and i need a crutch or stick for balance.
We have a daughter with dermatomyositis/lupus and my mother had severe RA; dodgy genes for sure.
I shall be reading posts with great interest and it’s wonderful to have found this forum