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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 Pain.
⚃ 1.2.3.2 How did I get this disease?
⚃ 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.
⚃ 1.2.3.1 Pain.
⚄ 1.2.3.1.1 Overview.
⚅ The medical community does not consider pain a factor in IBM.
≻ Many patients with IBM complain of experiencing pain, often 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.
⚄ 1.2.3.1.2 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.
⚄ 1.2.3.1.3 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.
⚄ 1.2.3.1.4 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.
⚃ 1.2.3.2 How did I get this disease?
⚄ Many patients become obsessed with understanding how they ended up with IBM.
≻ Patients often feel as if they must have done something to cause it.
≻ For example, it could be something related to their job or something they did in their house.
≻ One person said she thought it was from having her furniture treated with Scotchgard.
≻ The reality is that researchers do not know the cause.
≻ However, it is highly unlikely that anything one did contributed to getting the disease.
⚃ 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.
⚃ 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.
⚃ 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.
⚃ 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.
⚃ 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.
⚃ 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.
⚃ 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.
⚃ 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.