The Myositis Association (TMA) is Support, Education, Research, and Advocacy.
TMA is the leading worldwide organization for people with myositis, a rare autoimmune disease of the muscles.
TMA provides patient education and advocacy, facilitates patient support groups, hosts an international annual patient conference, engages the medical community in educating clinicians about these rare diseases, and funds research into the causes, treatments, and eventual cures for myositis.
Hi Vance. I have IBM diagnosed Jan 2017. I recognize your story. Fortunnately, there are more and more handy tools available.. I can't function without handy tools, so my "new" job is to find handy tools to ease and save energy in my daily life, f.e. sitnstand, indeelift. Fortunately, I can still walk with the Rollz Motion Walker/wheelchair. Take care! Greetings from the Netherlands.
I watched Dr, Todd Cohen's presentation live last year and It put me on an intense investigation of my s-IBM. I served in the Air Force from 1970 to 1974, with basic at Lackland, and ATC school it Keesler in Biloxi. I walked the air gun shot line many times in prep for overseas deployment. I recall that they only wiped the gun nozzle with an alcohol swab if somebody flinched and the skin cut left blood on the gun. I am 75 and my first symptoms were misdiagnosed as ALS. A muscle biopsy and a referral to Mayo Clinic cleared me of the ALS imminent death sentence, but at the time they had no other suggestions to explain my leg weakness and foot drop. After four years of decreasing muscle strength and more pronounced foot drop, I went back to Mayo Clinic and this time they said I most likely had IBM and there was no known cause and no known cure. Fro my own research I am convinced that Dr, Cohen is on the most promising research track. After watching the video please follow up with this webpage at the University of Utah. <learn.genetics.utah.edu/content/basics/prions/> s-IBM is a PRION disease! If you are a vet, share your story and petition the VA to recognize a possible connection to your service and IBM.
ASys, DM. My first treatment was IV steroids then orally. Rituxan every week added. Ambulation deteriorated and skin symptoms increased with each dose of rituxan.
Thank you Dr Raju for all of your hard work over the years to develop this drug for us patients. And thank you to your collaborators and team members as well.
Patient here. So for off-label use, how does the price compare to prednisone? From what I've read, the testing and clinical trials of vamorolone were funded by governments, plus disease and patient charities. Is that because it is out-of-patent? If the vamorolone price is in line with prednisone, would US insurance companies care which is prescribed? And since prednisone is so cheap, if vamorolone is only a few times the price many patients will willingly pay out-of-pocket to avoid the side effects. Background, I've had what turned out to be anti-HMGCR necrotizing autoimmune myopathy since 2006. At 100 kg body weight I started on 80 mg/day for several months, then tapered, and then on between 5 and 20 mg/day of prednisone for the next 14 years. It's pushed my weight up to 120 kg and eventually gave me type 2 diabetes. So my drug insurance will now paying for diabetes-related medications for the rest of my life. Because of the costs of diabetes, glaucoma, and osteoporosis, it seems to me that at the right price, vamorolone would be a no-brainer economic choice even for insurance company claims adjusters and accountants. (Once it has been tested enough to be prescribed either off-label.)
I was diagnosed with I B M app 10 years ago. I was given an opportunity for phone interview for app 45 minutes. But I was rejected for the test as I was diagnosed with thrombocytopenia 35 years ago and was fully treated the same year. Can someone please elaborate on this? Thank you.
26:22 Probably that is a result of the medicine (Corticosteroid) suppressing the immune system I would think. At least, I know of one example where the use of it resulted in a thin other skin surface and problems with healing bruces and cuts.
I'm 43, went to the doctor because of joint pain and weakness, went through about a year of tests after tests and waiting to be seen by specialists. I was recently this year diagnosed with Myositis Antisynthetase Syndrome. I just always thought muscle weakness and joint pain came with age so I sucked it up for a long time. Jist starting my journey and treatment. Good luck to everyone else!
I'm sorry you had to go so long before getting a definitive diagnosis. I just had my 3rd positive ANA and RNP...including now a positive biomarker for Inclusion Body Myositis. Docs have been awful and extremely dismissive to me for years as I have watch my muscles weaken and atrophy. Still without a definitive diagnosis. I did finally find a PCP who is caring, listens and give me feedback. I am seeing him again next week and hoping to get some referrals to Neurologist and Rheumatologist to get some answers and a diagnosis so I know how to proceed. The muscle weakness and exhaustion is absolutely horrible. I wish you the very best!
My liver specialist sent orders for routine blood work and for some reason the facility added a myositis panel to be taken by accident. Well...that showed my NPX-2 was high. He told me to see a rheumatologist and now knowing about the rashes and inflammation it all made sense. I am glad I was diagnosed by chance so I can tackle this while I am stable.
I believe my mother's side of my family all had it due to symptoms that lead to there passing and all my health issues from a child up to my age now 40 and my mother was the sickest and just gave birth to me with full blown dermatomyositis
This discussion aptly points out that Dermatomyositis symptoms can be quite varied and not textbook. It makes this disease challenging to cope with and probably frustrating for doctors too who want to read the books and adhere to what they say. However treating the disease should result in improvement in these off-label symptoms. Also, poignant remark, "the labs are always fine" is also an insightful comment.
Thank you for sharing your history and what you went through to get to the dx. I have hEDS and am currently being evaluated for Myositis I also have Sjogrens Syndrome. Just being told that there is something else going on that can be treated versus just being told there is no treatment or being turned away because the doctor is not familiar can be so disheartening. Thank you for sharinng your story Dale.
