I stumbled upon your videos while looking for info about Myositis, and I want to thank you for posting them. My boyfriend recently got diagnosed, and there is not nearly enough information out there. Have you ever done Plasmapheresis? His doctor wanted him to do this treatment, but his insurance denied it so he'll be getting IVIG instead. I would love to see a video about the changes you saw after getting various treatments, if any...I also think a video about how you got diagnosed and when knew your symptoms were more than just being tired etc. would be very interesting. He's 46 now, and only got diagnosed a few months ago but looking back it seems he's had symptoms for most of his life but they didn't really get severe until after cancer treatment. I wonder if you also may have had symptoms much earlier in life, but maybe dismissed some things as normal aches and pains? I'm really routing for you, and wish you the best! Your videos have been extremely helpful and informative when you have a condition most people have never even heard of.
Thanks Gina! I have not had plasmapheresis. The only real thing I ever noticed earlier in life was the one time I had severe atrophy in a tiny muscle in my back which messed me up and I couldn't raise one of my arms to the side. I had a physiotherapist notice and he gave me some exercises to work that muscle and things went back to normal. This was probably early thirties, maybe late twenties. Really I've been healthy and active all my life. All this started in the year of COVID. It's tough when no one knows the trigger of this illness.
A 45 year old white female presented with a 3 year history of fatigue and proximal muscle weakness which rapidly progressed over months to an inability to feed herself with significant dysphagia. Initial CK was 5,148 IU/L. Muscle biopsy showed a severe necrotizing myopathy with no primary inflammation. IVTT immunoprecipitation testing showed antibodies against SRP 72, 54, and 19. The patient was given a diagnosis of PM and treated with high dose oral prednisone, methotrexate, and mycophenylate mofetil with no significant improvement in muscle strength. Azathioprine was tried briefly but caused severe gastrointestinal intolerance. Nine IVIg infusions provided no sustained effect and were discontinued when she developed a pulmonary embolus. Since no primary inflammation was seen on biopsy, the patient’s physicians discontinued steroid therapy and the patient’s strength precipitously declined until she was bed-bound and enrolled in hospice. Manual muscle strength was graded 1/5 proximal upper and lower extremities and CK was 550 IU/L. She was then treated with intravenous pulse steroids and rituximab. Two months after rituximab, biceps and hip flexor strength improved to grade 3/5 and CK decreased to 237 IU/L. Methotrexate was added as an adjunctive medication and after six months, and CD19 and CD20 counts were still undetectable. To sustain the clinical response, rituximab was re-administered for two doses. Eight months later, CD19 and CD20 counts remained suppressed, but the patient felt increased weakness and was administered a fifth dose of rituximab. Hip flexor strength then improved to grade 4/5, while proximal upper extremity and knee flexor strength substantially improved to grade 5/5. Nineteen months after the initial rituximab dose, CD19 and CD20 counts remain suppressed and CK has normalized to 126 IU/L www.ncbi.nlm.nih.gov/pmc/articles/PMC3107255/
Thanks Kevin. Beautiful decoration ❤
Hey Kev thanks for the update. Merry Christmas to you and your family ❤️
Merry Christmas buddy.
I just found out of your situation from Christine U. Will definitely keep you in our prayers. F.R.O.G. (Fully Reliant On God)
Thank you so much! I appreciate it!
I stumbled upon your videos while looking for info about Myositis, and I want to thank you for posting them. My boyfriend recently got diagnosed, and there is not nearly enough information out there. Have you ever done Plasmapheresis? His doctor wanted him to do this treatment, but his insurance denied it so he'll be getting IVIG instead. I would love to see a video about the changes you saw after getting various treatments, if any...I also think a video about how you got diagnosed and when knew your symptoms were more than just being tired etc. would be very interesting. He's 46 now, and only got diagnosed a few months ago but looking back it seems he's had symptoms for most of his life but they didn't really get severe until after cancer treatment. I wonder if you also may have had symptoms much earlier in life, but maybe dismissed some things as normal aches and pains? I'm really routing for you, and wish you the best! Your videos have been extremely helpful and informative when you have a condition most people have never even heard of.
ua-cam.com/video/FnjhZgDohYE/v-deo.html
Thanks Gina!
I have not had plasmapheresis. The only real thing I ever noticed earlier in life was the one time I had severe atrophy in a tiny muscle in my back which messed me up and I couldn't raise one of my arms to the side. I had a physiotherapist notice and he gave me some exercises to work that muscle and things went back to normal. This was probably early thirties, maybe late twenties. Really I've been healthy and active all my life. All this started in the year of COVID. It's tough when no one knows the trigger of this illness.
A 45 year old white female presented with a 3 year history of fatigue and proximal muscle weakness which rapidly progressed over months to an inability to feed herself with significant dysphagia. Initial CK was 5,148 IU/L. Muscle biopsy showed a severe necrotizing myopathy with no primary inflammation. IVTT immunoprecipitation testing showed antibodies against SRP 72, 54, and 19. The patient was given a diagnosis of PM and treated with high dose oral prednisone, methotrexate, and mycophenylate mofetil with no significant improvement in muscle strength. Azathioprine was tried briefly but caused severe gastrointestinal intolerance. Nine IVIg infusions provided no sustained effect and were discontinued when she developed a pulmonary embolus. Since no primary inflammation was seen on biopsy, the patient’s physicians discontinued steroid therapy and the patient’s strength precipitously declined until she was bed-bound and enrolled in hospice. Manual muscle strength was graded 1/5 proximal upper and lower extremities and CK was 550 IU/L. She was then treated with intravenous pulse steroids and rituximab. Two months after rituximab, biceps and hip flexor strength improved to grade 3/5 and CK decreased to 237 IU/L. Methotrexate was added as an adjunctive medication and after six months, and CD19 and CD20 counts were still undetectable. To sustain the clinical response, rituximab was re-administered for two doses. Eight months later, CD19 and CD20 counts remained suppressed, but the patient felt increased weakness and was administered a fifth dose of rituximab. Hip flexor strength then improved to grade 4/5, while proximal upper extremity and knee flexor strength substantially improved to grade 5/5. Nineteen months after the initial rituximab dose, CD19 and CD20 counts remain suppressed and CK has normalized to 126 IU/L
www.ncbi.nlm.nih.gov/pmc/articles/PMC3107255/