Myositis Journey E27: More Progress Updates :)

[@MrWaynevflores]

Hello, how are you now? This is Wayne from Dublin, Ireland. Diagnosed with statin induced HMGCR POSITIVE NECROTIZING MYOPATHY. Having proximal weakness on my extremities. Can't stand and walk. Limited range of motion on my arms. Has rashes to my chest and back. Started with Rituximab infusion last 15th and 30th September 2024. To have dose again on March 2025. Also to receive IV Ig again this week. Still here in a rehab hospital for prolonged physiotherapy. Happy for you that your condition subsided and now improved a lot. Praying that my weakness resolves so that I can at least stand up and walk again. God bless you always Bro.

[@mikelliteras397]

Hi, your channel just popped up on my home page, I guess that’s what it’s called. I was originally diagnosed, back in 2002, with Polymyositis by a local dr but Mayo said IBM. Then NIH said PM and Dr Ottis at University of Pittsburgh said IBM and a skin biopsy showed DM. Now it’s thought I have all 3. I’ve done 8 study meds along with the usual IVIG, methotrexate and other useless meds. Prednisone for over 20 years now. I’m 57 now and in a wheelchair. I fell and shattered my femur 3 years ago and haven’t walked since. I can’t roll a wheelchair but I have a Jazzy air. I haven’t given up standing yet. I can stand in the pool. My hamstrings are strong enough but quads and hip flexors are a joke. Trying to follow a study done a few years ago that says I need to eat 1gm of protein per 1 kilo of body weight, vitamin D and testosterone where it should be and creatine 10gm per day. 100 gm of Protein is tough. Plus some exercise, of course. Supposedly this averaged a 38% increase in muscle strength 🤷🏼‍♂️. It’s worth a shot. I’ll keep watching, take care.

[@wanderingmusic38]

Wow. Thanks for sharing! 20 years is a long time. With necrotizing myositis the decline was extremely rapid for me, but for the last 6 months I've had steady improvement. (Albeit extremely slow). Here is hoping we both get back to walking in the near future! 🙏

[@mikelliteras397]

Amen to that brother. I was very athletic with bigger muscles so it’s taken a while

[@michellechen4025]

Great update! I'm so glad to see things are improving!

[@wanderingmusic38]

Thank you!

[@mdb0wman]

Kevin you're looking good man!

[@wanderingmusic38]

I try I try :)

[@albertlai536]

Just dropping a comment to say Hi and hope you had a chance to celebrate mother's day.

[@wanderingmusic38]

Thanks. Our celebration was mostly a nap for Mom :). Been so crazy lately. Hope your family had a good Mother's Day!

[@andthesunsets]

Thx for the update.

[@wanderingmusic38]

Any time!