Questions & Answers

There are no studies that statin drugs for cholesterol are contraindicated in IBM progression. Statin drugs may cause muscle problems, but for the right patient, can help save lives. Thus, you should talk with you muscle doctor about a statin, either if you are taking one now or if you were recommended to take one but have questions or need to be more carefully followed for any muscle problems from a statin.

The term "amyloid" sometimes refers to beta-amyloid specifically and other times is used to refer to abnormally folded protein aggregates (basically clumps of mis-folded proteins). The inclusions seen in muscle biopsies from patients with IBM can resemble inclusions in other diseases, thus it is important to also have the type of muscles involved and other aspects of the disease thoroughly examined by a skilled clinician, usually a neurologist or rheumatologist at a referral center, such as a university center which you have done. IBM shares many characteristics of amyloid depositions elsewhere in the body, and as we have better tools to examine the details of muscle the inclusions in muscle which do have beta-amyloid along with other, presumed mis-folded proteins.

Thank you for your service in the Korean War. The onset and worsening of weakness in IBM is a very slow process. The usual time from onset of symptoms to a diagnosis in our survey was more than 1 year in over 2/3rd of patients like you. From the Yale-IBM survey the loss of function was slow and those subjects exercising seemed to have less impairment or maybe slower declines. Other medical conditions can impact disability, and IBM slowly impairs people's ability to function. Since you went to a well-respected referral center, have you been back to a specialist? Although at present not much can be done to reverse the process, sometimes there are things which can be done to improve some aspects of living. A neurology center dealing with people with weakness would be a good place to start.

IBM, like other inflammatory myopathies, may be associated with other autoimmune conditions. Both hypothyroidism and Sjögren's Syndrome can impact muscle function, thus those conditions should be followed closely by your doctor(s) to determine if they might be contributing to your weakness.

You have been reading about IBM and from the Yale-IBM survey. From the Yale-IBM survey the loss of function was slow and those subjects exercising seemed to have less impairment or maybe slower declines. Thus, besides all the other health benefits, exercise may be useful in slowing the decline in function. We haven't followed individual patients over time, thus don't know if some patients worsen faster at some times and slower at other times. Other medical conditions can impact disability, and IBM slowly impairs people's ability to function, thus it's impact upon function may be greater over 60 years of age due to either a gradual decline in muscle strength using up one's reserves, or due to the impact of other diseases that people over 60 years of age have, or possibly accelerating over time. Since people without IBM have decline in functioning over 60 years of age, it may be difficult to answer your question with what we know now.

Thank you and to several others who pointed out this oversight. We have corrected our Registry sign-up page so that anybody in the world can now join.

Thank you very much for your comments! There are indeed a number of IBM groups on Facebook and these and others are great ways for patients with IBM and their families, friends and caregivers to share ideas and provide support to each other. We think these are also important groups for researchers to be more involved with too. Many of the things you mentioned that people trying are things that we have heard from others like you as well. Anything that we can do to share information like that is great. We plan to become more active in social media in the coming months and beyond.

Thank you so much for pointing this issue out to us. We are working on a fix for this and hope to update it shortly.

IBM has not been reported with statin treatment, although it is important to note that sometimes under a microscopy the changes in muscle due to a statin can sometimes have inclusions observed. A small pilot study of simvastatin in patients with IBM was neither beneficial nor harmful to their muscle disease. Statins have been linked to immune-necrotizing mediated myopathy, and other less serious muscle issues, and might occur in anyone. Thus, if there is any concerns about taking statins and muscle symptoms (such as muscle aches) or worsening of your IBM, you should ask your physician.