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- So I think inclusion body myositis impacts
not only the person but the loved ones around them.
And so I've often seen relationships grow and sometimes not.
So depending on those that you love
becomes an important part of your long term health.
The lifestyle modifications are probably one of the most
important parts of this strategy to live well with myositis
because there is currently no long term option
for pharmacologic or drug therapy today.
So a patient should be very aware of their surroundings
with regards to potential for fall.
Minimizing, for example, changes in terrain,
from carpet to a hardwood floor
can be a simple fix to just be very careful
and anticipate trying to minimize their chance of falling.
Watching their food choices
and being careful in that regard to any swallowing problems.
I think it becomes a strategy to be anticipatory
rather than reactionary.
In other words, anticipating if they should need
to go out to an event for possible issues
regarding stair climbing, etc.
So planning ahead, making sure someone is there
for assistance if needed,
or being able to strategize
trying to avoid stairs or any obstacles
that might make it more difficult for them to navigate
going out for example.
And then finally, maintaining an active lifestyle every day.
I think that the thought is when one has a muscle disease,
maybe perhaps resting the muscles would be important
and in fact that's the old paradigm.
We used to say, as soon as you were effected,
and your muscle enzymes were elevated,
that must mean you should rest,
in fact the opposite is true.
In our experience, the patients that do the best
seem to be those that exercise daily and consistently,
and that includes the upper body
and the lower body on a daily basis.
Enlisting the help of your spouse or partner
or sibling or someone close to you in that effort,
keeping you accountable is probably one of the best
strategies for maintaining regular exercise
and extending the longevity
of your muscle as long as possible.
I think the best strategy for caregiver education
are our partners like the myositis association
and patient advocacy groups,
they are present on a national level
and local levels.
And I think finding folks who have
and share the same story probably provide
some of the best benefits for feeling like
you're not alone.
And I think recognizing and going head on into the illness
and it's long trajectory,
likely years with this illness,
in a slow fashion is important
to discuss with those you care about.
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The other things that we ask patients to do
are maintain a healthy diet,
a good amount of protein sources,
and there are some vitamins that some people recommend,
however I always tell the patient
that certainly you can try them
and probably the only risk to you is to your wallet.
So because the studies are really small
and not necessarily conclusion,
while there is likely no harm in trying them
you may in fact be paying out of pocket
to try a vitamin source that may not in the end be helpful.
The other thought is creatine,
which is a muscle supplement to help with muscle bulk.
Again, limited data but some patients do find this helpful
and once again we find little to no harm,
there just may be no long term benefit.
I always tell patients to give it a
two to three month trial on average
and if it doesn't work after that to stop it.
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