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Hi Theodore, Unfortunately, the arimoclomol was a negative study, and didn’t meet the primary and secondary endpoints. Please check our News section for the announcement. I know this is difficult news, but at MSU we are committed to helping find a treatment for IBM. If you are not a part of our support group, I would encourage you to join us. See the Support section of our site, or visit https://Understandingmyositis.org/support My best to you.
Please keep me updated on the efficacy and availability of this drug Arimoclomol, as I am suffering SIBM and is slowly approaching the stage if the inability to walk unaided, I already cannot climb any stairs for the fear of falling and getting up from sitting is becoming extremely difficult.. It would be critical for me to start if the treatment is successful, as soon as possible.
Hi Jim and thank you for your comment. There is also another form of IBM recognized as Familial Inclusion body myositis. I will email you with that information.
To receive email updates, please register for your MSU membership using the Sign Up link at the very top of the site. I will include this in the email I send to you.
Thank you again!
I could thoroughly relate to all of your above informative articles on sIBM, as I was diagnosed with IBM in the early months of 2011 after extensive tests (Including a leg biopsy which confirmed vacuoles) at UVA Rheumatology in Charlottesville, VA, and later that year also confirmed at Johns Hopkins in Baltimore, MD. At that time I was 66 years old and the muscle weaknesses had not as yet progressed enough to be a problem. Now at age 75, the disease has very much progressed causing much difficulty in many daily activities. I am thinking more in terms of sporadic than hereditary IBM as to my specific age experience with this disease. However, I have a 1st and 2nd cousin on my father’s side of family that have also been diagnosed with IBM. And their diagnosis’ were confirmed at much earlier ages (40’s and 50’s). They are currently in much worse condition than I am, and wheelchair bound.
If you compare known incidence rate to general population, that in my family would be 3 in 70 people, compared to about 1 in 1.3 million. My father was one of 13 children so I am blessed with many 1st and 2nd cousins.
I would like to be included in your patient address listings to receive any available new information that comes-up about this disease in the future. I am a member of The Myositis Association. Thanks for posting your very significant and informative information about IBM on social media. You may use any of above information for your research and records.