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Contents: TREATMENT FOR SERONEGATIVE MYASTHENIA COPING WITH FRUSTRATING COMMENTS FROM OTHERS DRUGS USED IN TREATMENT OF MYASTHENIA GRAVIS TACROLIMUS MAY BE USEFUL IN MYASTHENIA GRAVIS
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TREATMENT FOR SERONEGATIVE MYASTHENIA
Approximately 80% of those
patients diagnosed with Myasthenia Gravis test positive for acetylcholine
receptor antibodies. Those who test positive on additional tests for myasthenia
but who do not have these acetylcholine antibodies have been described as seronegative.
For years the treatment has been the same regardless of whether the antibodies
were detected.
This is still basically true, but
recent findings are modifying the approach to seronegative patients. With a new
test released in 2003, it has been found that approximately 35-50% of
seronegative patients have antibodies against muscle specific tyrosine kinase
(MuSK). Of the patients who have tested positive for the MuSK antibodies, none
have had the aceytylcholine antibodies. Only limited data are available for
MuSK-positive patients, but they appear to have a variable response to
pyridostigmine (Mestinon), an excellent response to plasmapheresis, and an
overall good response to immunosuppressant medications. In the small number of
patients studied to date, there has not been improvement after thymectomy, but
additional studies in the future will be needed to verify this.
AMPS: Upstate NY Jan. 2005
COPING WITH FRUSTRATING COMMENTS FROM OTHERS
If you've been suffering from a
medical problem, it's not the easiest thing to deal with, right? Not only can
it be difficult, but also it can be even more frustrating to hear foolish
comments about the problem from others.
As Ralph Kramden of the
Honeymooners would say, "Some people have a B-I-G MOUTH!" You may
agree with this when you think of some of the comments you hear from people
around you. They may know you have a problem but that doesn't mean they know
how to talk to you about it, or what to say. They may say things that they feel
are right, witty, intelligent, or even sympathetic. But you may think
otherwise! There are times when a certain comment might make you want to
implant your knuckles into the speaker's teeth! Or a comment might make you
wonder if you're talking to a graduate of the Ignoramus School of Tactlessness.
But why are you reading all this?
You cannot change other people. You cannot improve their lack of sensitivity or
the way they talk. What you can do is learn how to cope with some of the
ridiculous comments that you may hear.
ARE OTHERS BEING CRUEL?
Most people really say things out
of sincere concern. They may be trying to make you feel better, show their
support, or show an interest in you by questioning how you're feeling. Does
that mean you must always be receptive to their questions and respond to all of
them seriously? It would be nice. The problem is that hearing the same
questions over and over can begin to get on your nerves. Initially, you may try
to gently respond to comments or questions, or politely change the subject. However,
this does not always work. Some people avoid this by simply not telling anyone
about their problem.
For the purpose of this article,
let's assume that we're discussing those comments that you can't avoid, from
people who haven't yet learned to tune into your feelings. If you haven't
experienced this, that's great! But read on anyway. You never know when what
you read might come in handy.
THREE WAYS OF RESPONDING!
Many of the things that people say
to you may be legitimate comments, but may bug you just the same. Others may
not even deserve proper answers. Still others may be said without considering
your feelings. But it doesn't matter why the comment is inappropriate. What
really matters is how you handle these comments so that you feel comfortable.
There are three ways that this can be done.
The first way is by ignoring the
comments. This is not always easy, especially if the person is waiting for your
response, or seems genuinely insulted by your lack of response. How do you get
them to stop asking (besides buying a muzzle!)? Change the subject or walk away
- ignore the question. The second way is by trying to answer in a rational and
intelligent way, explaining your answer, how you feel, or what you sincerely
want to communicate to the other person. But now you may feel like you're
banging your head against a wall. What if you just can't convince the other
person of what you're trying to say? Such frustration can be painful! There's a
limit as to how many times you can try to explain something clearly, and not
have it understood or accepted, before you explode. (This isn't good for your
physical health, either!)
What if the first two don't do the
trick? There's got to be a better way, and there is. The third way is to
respond humorously. What does this mean? If someone says something unreasonable
to you, or asks you a foolish question that can't really be answered logically,
you'll accomplish very little by ignoring it or trying to reasonably explain
your feelings. You don't know if your answer will be accepted or if the
interrogation will continue. So, in many cases, the third option may be the
best. This is called "paradoxical intention". The idea behind it is
that the person is asking or saying something that is really unanswerable. So you're
going to have a little fun with your response. Let's see how it works.
HANDLING THE "BIG
MOUTH" SYNDROME
What might you hear? And how
should you handle it? Remember, the best response is one that will educate the
"commenter". You'd like to explain your situation nicely, in a
non-offensive sincere way. But you're only human. So how can you respond when
you get fed up! Read on.......
"BUT YOU LOOK SO
GOOD....."
Let's say you've been living with
a chronic medical problem that causes you a lot of fatigue. The way you look
really doesn't indicate the way you feel. You've been awakened in the morning
after a full night's sleep, but you still feel tired. You have a lot of do to
get ready for your day's activities, but you don't feel like doing much of
anything. Your husband walks into the room and asks you if you are ready to get
up. You tell him that you're not ready yet, you'd like to rest some more
because you feel really lousy. He looks at you and says, "How can you feel
lousy? You look so good."
Wouldn't it be nice if you had
enough energy at this point to pop him in the nose? Any time your fatigue makes
you feel like your muscles have been drained of energy, it can be very
frustrating to be told that you should do more because you look good. This is
one of those statements that's hard to ignore, but it's just as hard and
impractical to try to answer it rationally. So how can you respond to his
statement humorously? You might say "Yes, I know I look good. You can call
my plastic surgeon and thank him." Or you can say, "Yes, I look good.
Wait until you see me without my mask on." Notice that in both of these
cases, you're agreeing with the person first, and then you're saying something
humorous. Isn't it better than saying, "How can you say I look good when I
feel so awful?"
....OR "YOU LOOK
AWFUL!" On the other
side of the coin, it can be just as upsetting when somebody says, "Wow,
you look lousy!" You may feel lousy but you certainly don't want to be
reminded of it. You surely don't want to think that the way you feel is so
obvious to others. You'd like to at least believe that you look ok to those
around you. Even if it is said sympathetically, being told that you don't look
well may be insulting. So what do you say? You might respond, "Thank you,
so do you!" or, "Yes, I know. I've worked hard to look that
way." Or if you are really in a cynical mood, you might say, "I know
I look lousy. That comes from hearing people tell me this!" Of course, you
could always say, "That makes sense, since I don't feel so hot,
either!"
ENERGY SHORTAGE: Because fatigue related to a medical
problem is so common, let's discuss another example. You are quietly sitting in
a chair trying to regain some energy because you really feel exhausted.
Somebody comes over to you and asks what's wrong. You try to explain that
you're feeling very tired and you're trying to gather some energy. In a
concerned way, the person says, "You're spending too much time thinking
about yourself. Just get up and do something. Soon you won't even remember that
you're not feeling well!"
How do you react to that? Do you
jump out of your chair? Of course not. If you had the energy to get out of your
chair, would you have been slumped there in the first place? Do you sit there
and try to explain that you're feeling lousy? No, because it probably won't be
believed. So how do you respond humorously? You might say, "I would like
to get up, but somebody put fast-drying glue on the chair, and I'm stuck
forever!" or you might respond, "I'm trying to set a Guinness World
Record for the most time I can spend in this chair." Or you might say,
"Do you know how much energy it takes to remain in this chair, when what I
really want to do is to get up and knock your block off?" Obviously, the
type of response you use depends on how angry or irritated you feel.
Remember: For this approach to work best, you want
to respond in a light-hearted way. This will show the person making the comment
that you're fine, but you just don't appreciate what he or she is saying.
Amps: Cope Scope and
DRUGS USED IN TREATMENT OF MYASTHENIA GRAVIS
By Darrell Childs, Licensed
Pharmacist
This article will give a brief
summary of the drugs used in the treatment of Myasthenia Gravis. It is by no
means complete or can't possibly cover all medications prescribed to patients
with this disease state.
Cholinesterase Inhibitors
These drugs include Mestinon
(Pyridostigimine bromide) and Prostigmin (Neostigimine bromide.) These
medications cause an increase of acetylcholine (the neurotransmitter, which is
deficient in Myasthenia Gravis which, may lead to increased muscular strength.
All dosages of these medications are highly individualized and titrated
carefully for each individual. A dose suitable for one individual may be an
overdose or underdose in another individual. Common side effects of these
medications include fatigue, nausea, vomiting, and diarrhea. These medications
essentially make everything "wetter", thus the patient may experience
increased salivation, tearing, and sweating especially in overdose. Difficulty
breathing and severe weakness is a sign of severe overdose and immediate
medical attention should be sought.
Corticosteroids
These drugs include Prednisone and
Methylprednisolone. Seventy-five percent of patients with Myasthenia Gravis have
marked improvement of their symptoms with Corticosteroids within eight weeks of
initializing treatment. Total remission of the disease sometimes occurs. Dosage
of Prednisone usually starts at 1.5 to 2mg/kg per day. Prednisone should
usually be taken with breakfast (food decreases stomach upset which the drug
may cause) and taking the medication in the morning more closely correlates
with Cortisol levels in the body. Diabetics should be aware that
Corticosteroids can and will cause increased blood sugar requiring increased
dosages of diabetic medications. Corticosteroid therapy should never be stopped
suddenly; rather the drug must be tapered down based on current dosages. Side
effects of Corticosteroid therapy (especially long-term) include: increased blood
sugar, increased susceptibility to infections, redistribution of body fat
(including moonface), facial hair on females, and although rare psychiatric
disturbances including psychotic behavior have occurred with Corticosteroids.
Long-term use may also cause weaker bones especially in females and ulcers in
the GI tract.
Immunosuppressant Drugs
These drugs include Azathioprine
(Imuran), Cyclosporine, and Cyclophosphamide. Azathioprine reverses symptoms in
some patients but the effect may take up to eight months. The drug must be
continued or the symptoms usually come back within two months. Azathioprine is
usually used in patients where Corticosteroids have failed. In resistant cases
both Corticosteroids and Azathioprine are used. Side effects of Azathioprine
may include more infections and very rarely some forms of cancer. Some patients
are started on both steroids and Azathioprine in the hope of discontinuing the
steroid after the Azathioprine starts to become effective. Patients given
Cyclosporine may improve in 1 to 2 months and maximum improvement is within 6
months of starting treatment. The dose is reduced to the minimum that maintains
the improvement. Kidney damage and high blood pressure (hypertension) are side
effects of Cyclosporine. Many drug interactions can also occur with
Cyclosporine. Cyclosporine is usually used only in resistant cases of
Myasthenia Gravis. Cyclophosphamide (an anti-cancer drug) is also used in
resistant cases of Myasthenia Gravis. Side effects are numerous and common and
may include: malignancy (cancer), increased infections, hair loss and fatigue.
In conclusion, knowledge is the
best weapon in understanding the medications used in the treatment of
Myasthenia Gravis. A newly diagnosed patient should demand information about their
medications from their physician and pharmacist. The patient should wear a
medic alert bracelet and should inform all health care providers of their
medications and that they have Myasthenia Gravis as certain medications may
exacerbate their conditions. Any new signs or symptoms should be promptly
brought to the attention of their physician and pharmacist. Although a very
difficult disease, many people with proper treatment, have the fullest and most
productive lives as everyone else. The life expectancy of someone with
Myasthenia Gravis is equivalent to that of the general population. Future
research into this disease will no doubt result in better treatment, better
diagnostic tests, and better quality of life for patients with Myasthenia
Gravis.
AMPS: Myasthenia Gravis
TACROLIMUS MAY BE USEFUL IN MYASTHENIA GRAVIS
A Japanese trial of the relatively
new immune system suppressant tacrolimus (Prograf, FK506) in myasthenia gravis
(MG) suggests the drug may have promise in this disorder.
In most cases of MG, the immune
system attacks the acetylcholine receptor, a docking site on muscle cells that
receives signals from the nervous system. The result is fluctuating weakness
that can be highly disabling.
Patients are commonly treated with
drugs that increase acetylcholine signaling and with corti-costeroids and other
medications that dampen the immune response. All these medications have complex
and potentially serious side effects when given for long periods.
In this 16-week study of 19 people
with MG (16 of whom finished the study), seven showed considerable improvement
on a scale of disease activity, and eight improved on measures related to
activities of daily living. There were no serious side effects.
The study was open-label, meaning
there was no comparison group taking a placebo (inert substance). The
investigators say the results suggest that tacrolimus "could safely serve
as an adjunct to steroid therapy for MG at low dosage."
MDA Publications, QUEST Volume 11,
Number 1, JANUARY/FEBRUARY 2004
In Memory of: By:
Tommy Harris City
of
John Laramore, MD
Thomas & Sandra Kerfoot
Scherffius, Ballard, Still & Ayres, LLP
C.W. Hayes, MD
In Honor of: By:
Elizabeth Kendley Alison
Schemmer