⚂ 1.2.3 Common questions IBM patients ask.

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The following questions appear over and over and therefore it may be helpful to address them here. These answers are based on the most recent research available.

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⚃ 1.2.3.1  Some abbreviations and what they mean.

⚃ 1.2.3.2  Different diseases?

⚃ 1.2.3.3  Stem cell therapy.

⚃ 1.2.3.4  There must be a medication!

⚃ 1.2.3.5  Falls.

⚃ 1.2.3.6  Swallowing problems.

⚃ 1.2.3.7  Swelling of the feet and ankles.

⚃ 1.2.3.8  Blood test for IBM.

⚃ 1.2.3.9  Muscle biopsy.

⚃ 1.2.3.10  Psychological acceptance.

⚃ 1.2.3.11  Pain.

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⚃ 1.2.3.1  Some abbreviations and what they mean.

⚄ IBM = inclusion body MYOSITIS.

⚄ IBM-SD = IBM Spectrum Disorder.
≻ A term recently introduced marking the speculation that IBM may constitute a spectrum disorder.
≻ Spectrum disorders describe conditions that do not have a uniform or a single presentation.
≻ In the case of IBM, subgroups are beginning to be identified suggesting it is spectrum disorder.
≻ For example, there seems to be one group showing early onset and another group showing later onset.
≻ As well, some cases appear very mild while others are much more severe.
≻ As research accumulates, our understanding of these subtypes well increase.
≻ A similar situation exists in the case of multiple sclerosis and Alzheimer disease.

⚄ sIBM = sporadic inclusion body MYOSITIS.
≻ Sporadic means that it just shows up here and there.
≻ This is an older term no longer recommended – Sporadic should be dropped.

⚄ fIBM = familial inclusion body MYOSITIS.
≻ Familial means that it shows up in two or more people in the same family in the same generation.
≻ This is an older term no longer recommended – familial should be dropped.

⚄ HIV-IBM = HIV-associated inclusion body MYOSITIS.

⚄ early-onset IBM = A type of IBM that comes on early in life.
≻ Mean age at symptom onset is 38 years, and the mean age at diagnosis is 45 years

⚄ IBMFRS = inclusion body MYOSITIS functional rating scale.

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⚃ 1.2.3.2  Different diseases?

⚄ sIBM, IBM, and fIBM are all the same disease – inclusion body MYOSITIS;

⚄ hIBM stands for hereditary inclusion body MYOPATHY a group of different diseases that are genetic (they involve mutations of the genetic code).
≻ Depending on the specific characteristics of their inheritance, they may be passed on to children.
≻ This is an older term no longer recommended – these different diseases now have names given to them that we should be using.

⚄ IBM is listed under the umbrella of idiopathic inflammatory myopathies (IIM).
≻ Idiopathic means they don't know what causes these diseases.

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⚃ 1.2.3.3  Stem cell therapy.

⚄ Stem cell therapy: IBM patients often ask about stem cell therapy.
≻ The use of stem cell therapy holds great promise but, at this stage, has not yet been developed to the point where it can reliably help IBM patients.
≻ Some patients resort to going to countries where the government does not regulate stem cell therapy.
≻ It should be noted that this approach exposes patients to unknown risks.

⚄ No stem cell treatment has yet been developed that will help IBM.
≻ Work is being done to develop muscle stem cells and there is a possibility in the future that this will be successful.
≻ It is not clear if muscles damaged by IBM will be able to integrate new muscle stem cells and produce new muscle tissue that will be functional.
≻ For general information see: Website.

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⚃ 1.2.3.4  There must be a medication!

⚄ Many patients try various medications, usually some sort of steroids.
≻ Many patients report being on prednisone and suffering side effects and not being able to get off the drug.
≻ Some patients report benefits from these drugs, however research has shown that these medications do not help in IBM. Today, based upon research findings, no medication is recommended for IBM patients.
≻ In some patients who have severe problems swallowing, medications or other procedures may be used to see if any improvement can be gained.

⚄  Prednisone: In the “old days,” doctors used to give prednisone for treating IBM, but it is now recognized that it does not help reduce weakness in IBM and may, in fact, increase the progression of IBM.
≻ It has terrible side effects and is hard to get off of.
Prednisone is NOT recommended as a treatment for IBM.

⚄ When first diagnosed, a short course of prednisone may help confirm the diagnosis.
≻ If you have IBM and are given prednisone, you should not respond.
≻ If you do respond, that suggests either you don't have IBM, or you may also have a second illness that does respond to prednisone.
≻ So, if you've been diagnosed with IBM and respond, then the doctors need to do further investigation to confirm the IBM and/or look for a second disease.

⚄  IVIG for IBM:
≻ It is generally seen that IVIG does not help people who have just IBM.
≻ May be tried when swallowing is an issue and may help improve swallowing in some patients.
≻ Some patients who have IBM plus something else may respond as IVIG treats the other disease.

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⚃ 1.2.3.5  Falls.

⚄ One of the early and consistent issues in IBM is unexpected falling.
≻ Muscle weakness in the legs causes instability in the knee.

⚄ IBM patients experience three major types of falls:

⚅ First, the knee may suddenly collapse, causing the person to fall straight down.
≻ These falls are sudden and unexpected, and you do not have time to grab onto anything.

⚅ The second type of fall occurs when the person loses balance, the muscles in the legs cannot compensate, and the person slowly falls over.

⚅ The third type of fall occurs when the person takes a step and the toe does not lift up high enough causing the person to trip and usually fall forward.

⚄ Fall prevention is essential as falls often lead to broken bones and head injuries.
≻ It may be helpful to use a knee brace or a cane, or a walker.
≻ Many patients put off using such assistance until they have had many falls.
≻ As well, two other factors come into play in falls.
≻≻ The first is to create an exercise program under the guidance of a therapist to see if leg muscles can be strengthened.
≻≻ Second, people with IBM tend to move less, and therefore, it is critical to manage your weight to ease pressure on muscles – excess weight makes falls more likely.

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⚃ 1.2.3.6  Swallowing problems.

⚄  Swallowing problems: Swallowing problems may occur at any time in IBM and are sometimes the first symptom seen.
≻ Occurs in about 65% of cases.
≻ Significant symptoms are the need to swallow over and over to get food to go down, the need to use liquid to wash food down, and choking.
≻ This is called DYSPHAGIA (sometimes mixed up with dysphasia – difficulties speaking).
≻ Weakness often leads to frequent choking causing a person to eat less and be afraid of eating.
≻ Malnourishment is common in these cases.
≻ When swallowing weakness is severe, treatments may be required.
≻ Often treated by stretching the throat by putting a balloon inside and inflating it.
≻ Sometimes treated by using Botox injections into the cricopharyngeal (CP) muscle in the throat.
≻ Sometimes treated by cutting the cricopharyngeal (CP) muscle in the throat; there is not much research on this, but people who have had it done report positive results (it is not clear how long these benefits will last).
≻ Some patients are given IVIG to see if this will help, and in some patients, it does.
≻ These treatments may result in temporary improvements.
≻ In cases of severe weakness, a feeding tube may be inserted into the stomach.
≻ Most people who have these tubes inserted report that they do very well afterwards.

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⚃ 1.2.3.7  Swelling of the feet and ankles.

⚄  Swelling of the feet and ankles: The less you move, the harder it is for the body to recirculate fluid from the feet back up to the heart, especially when you are sitting for long periods of time.
≻ Muscle weakness in the legs likely also contributes.
≻ The best treatment is prevention by using compression stockings, but in almost all cases, someone else must put on these.
Edema is the name of this swelling. Once it develops, it can be hard to get rid of.
≻ The use of medications (like Lasix) is only limited to short periods of time (days) as these medications damage the kidneys if used for too long.
≻ People often say that their old shoes no longer fit; this is probably because their feet have swollen and are larger, but it's hard to notice sometimes.
≻ Lack of movement, sitting around, and swelling all can reduce circulation making the feet feel cold all the time.

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⚃ 1.2.3.8  Blood test for IBM.

⚄  Blood test for IBM: About half of patients with IBM will have an antibody in their blood that can be seen in a special blood test.
≻ It is usually referred to as NT5C1A or CN1A.
≻ If you have this antibody and have all of the symptoms of IBM then it is likely you have IBM.
≻ It should be noted that this antibody can also reflect other illnesses, for example, systemic lupus erythematosus, systemic sclerosis, or osteoarthritis; as well, about 5% of healthy individuals will also show this antibody (it is not clear why).
≻ Because only half of IBM patients will have it, it is not diagnostic; if you don't have it, you could still have IBM.

⚄ Researchers have not been able to show any practical differences between people who have these antibodies compared to people who do not.

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⚃ 1.2.3.9  Muscle biopsy.

⚄  Muscle biopsy: Muscle biopsy by itself is usually not diagnostic.
≻ Many muscle biopsies in IBM are inconclusive or ambiguous.
≻ A muscle biopsy is a critical part of the diagnosis but must be interpreted in light of the overall pattern of weakness along with other symptoms.
≻ Muscle biopsies are usually taken from the upper arm or the thigh.
≻ Usually done by a surgeon under local anesthetic (freezing).
≻ A piece of muscle roughly the size of a sugar cube is taken out (not as bad as it sounds).
≻ The area can be pretty sore for a few days, especially if it is on the leg and you are trying to walk a lot.

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⚃ 1.2.3.10  Psychological acceptance.

⚄ IBM is a chronic and progressive illness that eventually may severely impair one’s normal activities.
≻ It is often difficult for people to come to grips with having this disease.
≻ It is normal for people to initially be in denial and have anxiety about what the future will bring.
≻ Giving up normal life activities involves a difficult, ongoing adjustment calling for flexibility and adaptation.
≻ Some patients have reported experiencing this loss as a feeling of grief similar to that experienced when you lose a loved one.
≻ Again, losing functions and adapting is a slow and ongoing process that you must deal with over time.
≻ Generally, it is beneficial to communicate with other IBM patients who can give advice and context to the new patient.
≻ As well is often helpful to have some counseling to better come to grips with the diagnosis of IBM.

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⚃ 1.2.3.11  Pain.

⚄ 1.2.3.11.1  Overview.

⚅ Many patients with IBM complain of experiencing severe pain.
≻ Many patients take medication, both opioids and non-opioid pain medications.
≻ Medicine has not created a medication to treat pain that is both safe and effective.
≻ Medications that are effective are often strong and many are addictive.
≻ Generally, they are not designed for long-term use, and all types have potential dangers, including improper use (for example, the wrong dose or using a drug too long) as well as drug interactions.
If you suffer significant pain, you should discuss this with your doctor.

⚄ 1.2.3.11.2  Using Cannabidiol (CBD) to Treat Pain.

⚅ Many patients with IBM treat pain using marijuana (cannabis), often in the form of cannabidiol (CBD).
≻ In marijuana, the two main chemicals are CBD (Cannabidiol) and THC.
≻ THC is the chemical that gives people the feeling of being “high.”
≻ CBD is the main chemical thought to help with pain.
≻ CBD is unregulated, and there is really no standard dose.
≻ CBD is available in various forms, for example, as gummies, oil, and capsules.
≻ Often, people cannot be sure of what they are buying.
≻ No medication using CBD and/or THC is FDA-approved in the United States; however, several are available. For example, Nabiximols (Sativex), Epidiolex, Marinol (Dronabinol), and Cesamet (Nabilone).
≻ There needs to be more research done on CBD and its effectiveness.

⚅  Take away: Using CBD for pain is not FDA approved, and there needs to be more research done to validate its use.
≻ There are major challenges in purchasing a chemically pure and accurately dosed CBD.

≻ Researchers state that it is a promising approach and patients generally say it works.

⚄ 1.2.3.11.3  Opioid Medication.

⚅ Many IBM patients are prescribed opioid medications for pain.
≻ At higher doses of opioids, side effects may occur (poor concentration, depression, drowsiness, anxiety, heart problems, bowel issues like constipation, etc.).
≻ Accidental overdose can be fatal.
≻ Using other medications, drugs, or alcohol along with opioids dramatically increases the risks.
≻ Because opioids create “good” feelings, they often become addictive.
≻ Long-term usage leads to physical dependence (the body adapts to the drug, and if you stop taking it, you will likely experience withdrawal symptoms).
Due to the risk of dependence, these drugs should not be used to treat chronic pain.

⚄ 1.2.3.11.4  Over the counter medication.

⚅ Many patients with IBM treat pain using nonsteroidal anti-inflammatory drugs (NSAIDs).
≻ These are over-the-counter medications sold in drugstores.
≻ NSAIDs block prostaglandins (hormone-like chemicals in the body), thereby reducing inflammation, pain, and fever.
≻ Examples include; aspirin (various brands), ibuprofen (such as Nurofen), naproxen (such as Naprosyn), naproxen sodium (Aleve), diclofenac (such as Voltaren), and celecoxib (such as Celebrex).

⚅ Another over-the-counter medication is Acetaminophen (Tylenol).
≻ Acetaminophen raises the body’s pain threshold and reduces its temperature.