Questions and Answers
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Frequently Asked Questions
Q1: Are IBM patients more likely to be men or women?
Our data shows that IBM is found in men much more often than women:
Q2: What percentage of IBM patients live in their own home?
In our survey, over 91% of respondents indicated that they lived in their own house or apartment.
Q3: Do many people with IBM complain about constipation?
Limited mobility could make constipation worse. To date, that has not been a noted issue in patients with IBM, however, it is the type of question which could be part of a future survey. Thanks for asking questions which others may not have examined or been aware of in patients with IBM.
Q4: Your survey showed that most people with IBM do not others with the disease. However, my mother had IBM and my sister had polymyositis.
Most people with IBM don't know of anyone or family member with IBM. As it appears to run in your family, if you are interested, the National Institutes of Health are interested in studying families with more than one member having IBM. To find out more, please contact Dr. Adam Schiffenbauer at the following email address: firstname.lastname@example.org
Q1. Does anyone know where IBM comes from? Could it start from a rare virus or be transmitted by mosquitoes the same as diseases such as Ross River virus or Lyme Disease?
Investigators have not been able to find viruses in muscle biopsies of patients with myositis. It may be that a viral infection initially triggers IBM or other types of myositis but are then no longer there. There isn't any evidence that Lyme Disease is a cause of IBM. A study in Japan found an increase in hepatitis C infection in about one fourth of patients with IBM.
Symptoms & Treatments
Q1. I have difficulty raising my arms to perform simple tasks. Is there anything that can be done to help me?
Exercise for your arms may help. Please see a physical therapist or occupational therapist to explore what can be done to help.
Q2. I cannot get out of a chair without help and have had a few falls the past year. My therapist has suggested leg braces but they are rather costly. Has anyone had any success with braces?
Some people do obtain help in walking a bit more comfortably with braces. Others feel that exercising as much as possible to build up the remaining muscle helps. Your therapist is probably the best person to know, but just as with any expensive item, you might want to shop around to learn what your options are.
Q3. I find that my legs "fold up" very easily if I make a slight misstep and my therapist has suggested leg braces. The cost is rather high and I am not sure if would help.
As you are aware some muscles are very weak in patients with IBM. Walking can be difficult, even sometimes just walking into the wind. If you are having troubles walking without falling, then there are some walking devices to assist you, such as a cane, a walker or braces. Your therapist should know what options might work best for you. Falling itself can cause problems, but especially in patients with IBM who might have difficulty getting up.
Q1. Has there ever been any research with hyperbaric oxygen treatment for IBM patients?
There has only been a single case report of a patient with IBM showing some improvement after being treated for something else using hyperbaric oxygen, however, improvement in the other disease might have been a contributing factor.
Q2. What is the status of the experimental drug BYM338?
BYM338 is still under investigation, thus it is not yet clear if it is sufficiently beneficial, which may take a long time to prove in a disease as slowly progressive as IBM.
Q3. I’ve heard about there is research into a possible connection between ALS and IBM. Is this true?
Many researchers are looking into what causes IBM, and you are correct in that there may be some link between IBM and other degenerative diseases. The abnormal processing of proteins in IBM might have parallels to abnormal protein process in Alzheimer's Disease.
Q4. What efforts are being done to cure IBM?
There have been several interventional, investigational studies trying different treatments for IBM, however, to date none have been successful, thus many people haven't heard about them. One compound did have some early signs in a small number of subjects but a larger follow-up study with over 250 patients with IBM found that those initial findings were, unfortunately, not confirmed. We're all trying to learn more about IBM, which is one reason why we did the Yale-IBM survey. It will however take much more learning about what is causing IBM before we find a cure. People are looking, we just haven't found it yet.
Q5. This article was mentioned on the Myositis.org community forum along with a note that 30-40% of IBM folks have a certain type of Leukemia: http://www.ibmmyositis.com/Greenberg2016a.pdf. What are your thoughts on this?
This is a possibly interesting lead in what might be causing or making IBM worse. It does highlight the need for patients with IBM to participate in studies to help understand what might be causing IBM.
Q6. Have you any research on the effect of diet on progress of this condition? I have tried to eliminate foods that cause inflammation for me (cow's milk primarily) and I wonder if that is also helping to maintain my strength.
We don't know if diet might an impact inflammation or muscle weakness in IBM, but that could be an area for future surveys, so thanks for bringing it up.
Q7. It took over a year for me to get doctors more involved in determining a diagnosis and I’m discouraged by the disease progression. I am definitely supportive of any clinical trials that might be on the horizon.
Thank you for your appreciation of the need to study IBM to further our understanding and find something to help. Progress is slow in IBM research due to its nature and our limited understanding of what causes or worsens it, but many people are trying to learn about IBM. Even your participation in this survey helps, as others can share their experiences and researches can better understand and measure how it progresses over time.
Q8.How can I donate to IBM research?
There are a number of patient groups, research institutions, and online websites that accept donations in support of IBM research or support for IBM patients and their families. Here are links to some of these groups where you may donate money and read more about the kinds of research each group does or the kind of support they provide:
- The Myositis Association
- The Muscular Dystrophy Association
- The Inclusion Body Myositis Foundation
- The Greenberg Lab
- The Johns Hopkins Myositis Center
- American Autoimmune Related Diseases Association, Inc.
Q9. What other ways can I support research in IBM?
In addition to making financial contributions, people with IBM may sign up to participate in clinical trials. Go to ClinicalTrials.gov for a listing of current and past studies in Inclusion Body MYsositis.
Disease Progression, Co-morbidities & Other Questions
Q1. Is there any reason (studies, etc.) suggesting that statin drugs for cholesterol control are contraindicated in IBM progression?
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.
Q2. The biopsy confirming my IBM also found Amyloidosis, which I understand can mimic IBM. Could some people with IBM instead have Amyloid Myopathy?
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.
Q3. I was diagnosed with IBM in 2007 from a muscle biopsy. I am a disabled Korean Veteran and 80 years old. My doctor said it is acting slowly on me. Is there anything that can help me better cope with IBM?
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.
Q4. I have hypothyroidism and Sjögren's Syndrome as well as IBM. Are you looking at the preponderance of co-morbidities that relate to inflammation in patients with IBM?
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.
Q5. I know people diagnosed in their 50's progress slower. Is that only true in the first few years and then we start deteriorating faster in our 60's, like those diagnosed after 60? Does our pattern of slower deterioration continue? I go to the gym regularly, which also helps my morale.
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.
Q6. I would like to join your registry to keep up to date with what you are doing, it is quite interesting. I am in Canada though and it only accepts people in the U.S.
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.
Q7. There are a few Facebook support groups now that you might find interesting and there is one that I know of that is an open group. We have learned a lot about IBM from each other and what we can do to try and slow its progress, mostly light exercise, clean eating, vitamins especially CQ10 & D3, and a lot of people find cannabis oil &/or hemp oil are beneficial. Anything we can try to slow this monster down. Anyway I would love to keep up to date with anything I.e., if you do a newsletter. Thanks so much.
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.
Q8. I just answered the questions on your Personalized IBM Index Calculator. It needs to be updated in the line where it asks for year diagnosed. It will only accept up to 2015 and I was diagnosed in 2016 and it is now 2017.
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.
Q9. Has there been research between IBM and taking statins?
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.