New here 🙋🏼‍♀️

[Penelope-Mary]

Penelope-Mary

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

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[Goldyukr]

Welcome! I have a more mild form of myositis but it still is very disrupting to my life as I also have neuromuscular dysfunction, small fiber neuropathy and my blood vessels are affected as well. No overall name for my condition as it is an unusual combination. My husband always says I'm one of a kind! I've been on prednisone for two years and HATE IT so I finally convinced my doctor to try an immunosuppressant and so far so good with azathioprine. Still a bit early to tell but I'm hopeful. Take care and look forward to hearing from you.

[Penelope-Mary in reply to Goldyukr]

Oops! I replied but it didn’t stick.. thank you Goldyukr for welcoming me!

I think it’s frustrating to not have a label so well done you staying sane 💫.

It’s great to be weaning off pred and on azathioprine. Our daughter is doing the same...🤞🏼🤞🏼🤞🏼 For both of you.

I’m so glad to have found this group, for me myositis is quite debilitating. Of all the lupus symptoms it is by far the worst.

Thank you for having me 😘

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