Ehlers-Danlos Syndrome Awareness

My wife and I are great friends with a couple who have a daughter with Ehlers-Danlos Syndrome (EDS).  This, my friends, requires no less than a Super-Hero like existence to live with.  Hearing the stories that our friends have shared with us about raising their daughter with EDS illuminate an awareness of parental perception that is hard to imagine. 

EDS is a connective tissue disorder.  The connective tissue is used to hold together and stabilize your skin, muscles, ligaments blood vessels and internal organs.  Collagen is a protein which adds strength and elasticity to connective tissue, like glue.  Different hereditary gene mutations may cause problems with the collagen, which may lead to EDS.

EDS is characterized by a stretchy, soft, velvety skin which is very easy to tear.  Bruising may be very easy and quite common and cuts may take an extended time to heal.  It common for stitches to tear out of the skin after wounds has been sutured. 

The joints of a person with EDS may be hyper-mobile.  It is common to see frequent dislocations of joints and the joints regularly move beyond the normal range of motion.  Joint pain is quite common and early onset osteoarthritis is far too regular an issue.

Less common symptoms can occur when someone has the vascular type of EDS which affects internal organs and blood vessels.

Life expectancy is usually not effected by EDS, unless the individual has the vascular type.  With the vascular type it is possible that life expectancy will be shortened due to organ or vessel rupture.

EDS is divided into six categories based upon their specific symptom type.  The specific symptom type, or category, will not change when passed on to the next generation.    Specifics regarding the chance and pattern of inheritance are available through information websites.

It wasn’t until the late 1960’s that EDS was first categorized.   As recently at 1997 a final description of the different categories and diagnostic criteria of EDS was published.  There is no current cure or treatment for EDS.  The only resolution is to treat symptoms as they appear.  

Vigilant lifestyle awareness is imperative at maintaining a long and healthy life with EDS.

Ehlers-Danlos National Foundation

U.S. National Library of Medicine

Please take the time to share this blog with your friends, Ehlers-Danlos Syndrome needs awareness, and please comment if you have any EDS stories to share!

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Modern Day Snake Oil

The other day I was working and the pharmacist that I work with was telling me about an infomercial he had been listening to on the radio.  He went on to describe how this self-proclaimed Dr. of Chiropractic was touting the benefits of 14 different strains of Vitamin C and how each one was of vital importance to your daily living function.  For a fee of how ever much money, he will gladly send you a month supply of the remedy, and if you are not completely overwhelmed with satisfaction he will guarantee to refund your entire purchase!

This sounds like the modern day snake oil salesman.  Someone rides into town on a covered wagon and sets up shop at the town square.  He stands on the back of his wagon proclaiming the benefits of these great items in treating such ailments as pain control, blood pressure, depression, skin health, stomach ailments and even cancer.

In the early 1990’s, Congress set out to put some safety and limitations on the sale of dietary supplements and decrease fraudulent advertising.  The plan was to limit the ability to advertise false claims and restrict the labeling requirements on dietary supplements.  The health and food industry got wind of the impending regulations and created a national scare.  The health-food industry was able to convince the public that it was the plan of Congress to take away their right to purchase vitamins. 

The ensuing deluge of letters to congressmen put a halt to the impending change in laws.  As a compromise, the Dietary Supplement Health & Education Act (DSHEA) of 1994 was passed.  Basically, this means that dietary supplements cannot be advertised with unsubstantiated drug claims listed on the label.  Also, the label needs to contain the statement that the product or ingredient is not intended for the prevention or treatment of disease.

Here are a couple of issues:

·         The dietary supplement law does not exclude herbs, botanicals, metabolites, extracts, amino acids, or any combination of the above.  The original intent was to define dietary supplements as nutrients provided needed to replace nutrients that are missing from the diet.

·         Even though the advertising cannot include cures or treatments, it may include terms such as support (i.e. This item supports a healthy immune system, or this item supports super brain function, etc)

·         Before marketing and selling, the company does not need to get approval from the FDA showing that it does what it says it does.  It is up to the FDA to search for products being marketed, test them, and then force them off the market if they are advertised inappropriately.  This allows for companies to advertise new products however they want.  If they get caught by the FDA, they need to remove it from the market, however; they can then reformulate the packaging and sell it again under a new label.

·         The FDA is not able to take a product off the market that has been proven to be useless, yet not harmful.  A company may still sell it with claims that it “may support certain disease states”.

·         Products that are similar in structure to illicit street drugs may be marketed as dietary supplements without FDA approval.  The product will be on the market until the FDA finds out about it, tests it, and then bans it.

·         The “burden of proof” lies within the FDA, not the manufacturer or advertiser who is selling the dietary supplement.

The Dietary Supplement and Non Prescription Drug Consumer Protection Act was passed in 2006.  Beginning in 2007, manufactures of dietary supplements are required to report any serious adverse reactions or deaths related to their product.  Really!?!?, I can’t believe it took until 2007 for this regulation to come into place. 

This truly is an industry where the BUYER BEWARE motto needs to be in full force. 

“The FDA has never had enough resources to cope with the enormous amount of deception in the supplement and health-food marketplace. DSHEA has made the problem worse. If I were FDA Commissioner, I would drop any pretense of being able to protect the public. Instead, I would announce that unless Congress provides an adequate law, the FDA cannot protect the public from the deceptive marketing of what DSHEA calls dietary supplements.”

Dietary Supplement Health & Education Act (DSHEA) of 1994 official document

Dietary Supplement Health & Education Act (DSHEA) of 1994 Consume Protection Review

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Do You Know Where "Your" Pills Are?

I told this story a few months back, however, a very similar event happened just the other day, so I felt it necessary to share this story again.

Not too long ago I had one of my regular customers call me to get a refill on her Vicodin.  This particular patient has some significant pain issues and picks up a reasonable amount of medication every 30-40 days.  After talking with her on the phone for a few moments, we realized that she had filled her prescription only 14 days ago, and here it was, almost empty.   I realized we needed to take some time here and figure out what happened.

There are many ways to handle this, however, I like to take some time and "walk around the barn" with the patient to try and figure out what is going on.  First of all, this patient has been with us for the 15 years I have been at this pharmacy, and this is the first time she has ever called in for an early refill on her pain medication.  After a short discussion, I am convinced that she is not taking more than is prescribed for her.  Next we talk about those 7 day pill boxes, asking if she fills up pill boxes for the next couple of weeks and perhaps that is where the extra tablets are.  She said no, she does not use pill boxes.

She told me that she always keeps her pills in the original container, in an open shoe box, along with all of her other medications.  I asked her where she kept the shoe box.  She said that she keeps it on the dresser in the hallway just outside her bedroom.   The following question got to the root of the situation.  I asked her if anyone else has been in her house recently. 

She thought about it for a few minutes and talked about her granddaughter coming sometimes, and then she talked about a group of workers she had in her yard the previous week working on her patio.  She had let them know that the door was open and they could use the restroom whenever they needed.  The dresser in the hallway with the open shoebox of medications is in the direct path to the restroom. 

I am convinced that this happens much more often than we would like to believe.  An invasion of medication privacy and possibly theft of our medications is an issue that we all need to guard against.  It is far too common for a guest in your home to step into your restroom under perfectly reasonable circumstances, and then proceed to open your medicine cabinet and examine what lies within.   

When people hear of drug theft, the first thing that comes to mind is something illicit involving bad guys and guns.  Over the last 15 years at the pharmacy that I am currently working at I have had at least 10, and most likely more, conversations where we figured out that their medications had been stolen from them by either a caregiver, family member, or a guest in their home. 

Keep in mind, this does not include the multitude of conversations I have involving people who claim their medications were stolen but also have a long history of their pain medications regularly being stolen, lost, damaged or some such thing on a regular basis.  This topic we will discuss in a future blog. 

Please, store your medications in your bedroom.  Choose a location that is dry and maintains a relatively constant room temperature.  For security reasons, keep your medications in a dresser drawer or in your closet so they will not be seen if anyone enters your bedroom.  Your medications are your private business.  Your guests in your home should not be tempted to pick up your prescription bottle so that they can read the name of the medication.

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Advance Health Care Directive

Here’s the thing; chances are, you or someone you dearly care about, will end up in a hospital bed at some time or another.  Do you know exactly what their wishes are, and do they know exactly what your wishes are?  More importantly, do you have them written down and notarized so that there will be no legal question as to yours (or their) wishes?

An advance health care directive, also known as living will, personal directive, advance directive, or advance decision, is a set of written instructions that a person gives that specify what actions should be taken for their health if they are no longer able to make decisions due to illness or incapacity. The instruction appoints someone, usually called an agent, to make such decisions on their behalf. A living will is one form of advance directive, leaving instructions for treatment. Another form authorizes a specific type of power of attorney or health care proxy, where someone is appointed by the individual to make decisions on their behalf when they are incapacitated. People may also have a combination of both. People are often encouraged to complete both documents to provide comprehensive guidance regarding their care.

The following two links are excellent resources for advanced directive forms and questions.

An excellent article written in the NY Times talks about Advance Directive and the emotional barriers we put up that keep us from getting it done.

Talk to your parents, your spouse, your partner or your kids and get it done.  Really, it is not that difficult and it will make everything so much easier when you need it!

Those of you who have complete one, please comment and tell everyone how easy it was.  Those of you who have not yet completed one, please comment and tell us what your barriers are.


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Dizzy Or Not; Here I Come

My good friend from way back sent me a note the other day:

"Hey Steve, one thing you may want to consider discussing on your page is on the overuse of meclizine for an incorrect diagnosis of vertigo. Many elderly people (my dad) have undiagnosed orthostatic hypotension that take drugs like Cardura for hypertension or Prostate. Unfortunately, Meclizine increases the levels of Cardura making the "vertigo" worse causing the patient to take max dose of Meclizine.... what a mess it was. Also, because Meclizine was prescribed by ER doc and is over the counter, it missed ALL safety catches."

My friend is exactly right.  If a patient is taking the sustained release form of doxazosin (Cardura XLTM), the side effects of the meclizine will slow the transit time through the gastro intestinal tract and allow for an increased absorption of the medication.  This increased absorption will definitely increase the level of the medication and decrease blood pressure even more, causing more dizziness!

Meclizine is an over the counter medication that blocks certain receptors in your brain that are associated with vertigo and motion sickness.  This medication usually works quite well for short term treatment of someone with motion sickness (nausea from being on a boat) or vertigo (perhaps some dizziness from an inner ear infection).  The problem with this medication is that it has a whole host of side effects such as drowsiness, dizziness, dry mouth, blurry vision, constipation etc…

Unfortunately, the scenario that my friend presents is all too common.  An elderly person may be feeling faint or dizzy after hours.  Their doctor’s office is closed so they present to the emergency room.  Of course, the concern is that there may be some blood clot issue such as a stroke or heart attack causing the dizziness or uncomfortable feeling.  Many tests are done to rule out life threatening concerns. 

The patient is then discharged from the emergency room with an order to go pick up some over-the-counter meclizine and take as directed.  If the problem does not get better, follow up with your primary care doctor.  In this situation, the big picture is looked at; however, the little picture is missed.  Is there something that the patient is already taking that may be causing this to happen?

I talk a lot about medication responsibility, communication, questions, community pharmacy and yes…more communication.  It is so important that everyone write a list of all the medications they are taking and put it in their wallet.  Every time you go to your doctor, pharmacy, or any other health care provider, take out the list and show it to them.  Make certain that everyone knows exactly what you are taking and why.

Now the important part that only you or your care giver can do; be sure to ask your health care provider if any of the medications you are currently taking will interact with what you are going to receive today.  Quite often your health care provider will be happy to look at your list; however, it is possible that they will not take the time to officially verify any critical interactions between what they are giving you today and what medications you may already be taking.

(not mail order.....)

Please people, filling your prescription should not be the same as how you order your e-books or sweaters on line.  Please take the time to develop a relationship with a community pharmacist and fill your prescriptions at a community pharmacy.  Shop around and find a community pharmacist that you feel comfortable with and trust.  When you receive a new medication, prescription or over-the-counter, ask to speak with your pharmacist.  Discuss all of the important information and make sure your understand what to expect from the medication.  Add the medication to your list and have your pharmacist check it to make sure all looks appropriate.

Finally, if you are ever feeling dizzy, call your community pharmacist and ask them if any of your medications tend to cause some dizziness.

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Nerve Pain Meds Take Time; Be Patient

I am sure that you have noticed as you go through life the phenomenon that happens; the more you pay attention to something the more you see it happen.  Over the past few months I have been discussing nerve pain with quite a few people, and have realized that quite a few patient s stop their nerve pain medication after taking it for only 1-2 weeks.  The more I pay attention to this particular topic, the more I see that folks need some education around their nerve pain meds.

When a nerve is damaged for one reason or another, it gets activated inappropriately and sends messages to the brain that are unsolicited.  This process is similar to when an individual experiences a seizure.  During a seizure, unsolicited nerve impulses are being sent to the brain causing the epileptic reaction.  It is interesting that anti-seizure medications, which have a nerve calming effect, also work well to calm an inappropriate nerve pain impulse.

Because nerves are everywhere in our body, it really only takes a small amount of nerve damage to cause significant nerve pain.  Those of us who have even experienced a small amount of nerve pain realize how debilitating it can be.  There is an exhaustive list of what can cause nerve damage, including trauma, cancer, disease, medications and genetics.  For the purpose of this discussion, I am more interested in talking about the motivation needed to take nerve pain medications.

Nerve pain medications interfere with the signal transmission process.  This works well when the signal the medication is interfering with is a pain signal.  The issue is, many signals are constantly being sent through your nerve pathways, and quite often, some of the signals used for other body functions may be interfered with also.  This is a complex process that needs to be diagnosed and monitored by a physician. 

This category of medications has the possibility of helping decrease nerve pain; however, it is extremely important that the patient be fully aware of all the counseling information about the specific medication before they begin treatment.  This category of medications requires specific counseling around titrating the medication to the appropriate dose for the each particular patient.  It is not uncommon for a patient to experience some significant sedation for the first 1-2 weeks of therapy.  The body will usually acclimate to the side effects, however, in the titration process, each time the dose is increased the body may go through this process again. 

These medications quite often require a certain level of motivation in a patient, along with encouragement from their pharmacist that when the titration is followed appropriately, your body will most likely acclimate to the side effects.  It is not unreasonable to slowly titrate up the dose over a period of 1-2 months until the appropriate level of pain control is achieved.  Again, during this titration period you may feel sluggish, have slow thought processes, feel sleepy, and perhaps have limited reflex response. 
Have patience, take your time, and give the medication a chance!

This may be a difficult process to work through for some people; however, quite often this category of medications will provide a sustainable level of pain control much more effectively than taking a narcotic pain control regimen.

I currently have Medication SpecificCounseling SessionsTM  for medications used to treat nerve pain, including Gabapentin (NeurontinTM), Duloxetine (CymbaltaTM), Pregabalin (LyricaTM), and Carbamazepine (TegretolTM) available at  Please visit the registration area of AudibleRxTM and sign up to become a member and you will then have full access to all of the counseling sessions for a full five years.

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Seniors, Medicare & The Affordable Care Act

The following information is provided directly from the web site.

The Affordable Care Act makes many changes to strengthen Medicare and provide stronger benefits to seniors, while slowing cost growth. As a result, average Medicare beneficiary savings in traditional Medicare will be approximately $3,500 over the next ten years.

Beneficiaries who have high prescription drug spending will save much more – as much as $12,300 over the next 10 years. In comparison, Medicare beneficiaries with low drug costs will save an average of $2,400 over 10 years.

This report provides estimates of savings from the Affordable Care Act to seniors and people living with disabilities enrolled in traditional Medicare. The Affordable Care Act will favorably affect beneficiary expenditures in four ways.

First, premiums for Part B physician and certain other services are expected to increase at a slower rate than would have occurred without the Affordable Care Act, resulting in lower Part B premiums over time.

Second, beneficiary co payments and coinsurance under Part A and B will increase more slowly because the Affordable Care Act slows the rate of growth in payments to hospitals and other providers.

Third, closing the Medicare prescription drug coverage gap, often called the “donut hole,” will lower costs for beneficiaries who otherwise would have been required to spend thousands of dollars out of their own pocket for their prescription drugs.

Fourth, the Affordable Care Act will provide many preventive services to seniors at no additional cost.

The Affordable Care Act will save approximately $500 billion over the next ten years through:
  • reduction in extra subsidies paid to Medicare Advantage plans,
  • reductions in the rate of growth in provider payments,  
  • efforts to make the Medicare program more efficient and to reduce waste, fraud and abuse.

These reductions will lead to corresponding savings for beneficiaries through lower co payments and premiums. A slower rate of growth in Medicare is expected to result in a slower rate of growth in beneficiary out-of-pocket payments, and a slower rate of growth in Part B premiums. In addition, the closing of the donut hole will result in large savings for beneficiaries with high levels of prescription drug spending.

Medicare D Drug Discounts

The Affordable Care Act includes benefits to make your Medicare prescription drug coverage (Part D) more affordable. It does this by gradually closing the gap in drug coverage known as the "Donut Hole."

What This Means for You
Starting January 1, 2011, if you reached the coverage gap in your Medicare Part D coverage, you would have automatically received a 50% discount on covered brand-name drugs. You receive the discount when you buy them at a pharmacy or order them through the mail, until you reach the catastrophic coverage phase.

You can expect additional savings on your covered brand-name and generic drugs while in the coverage gap until the gap is closed in 2020. From now until 2020 the gap will slowly be phasing down.  Follow this link if you want to see the exact phase down cycle.

Please use the comment section to share your concerns about Medicare and the Affordable Care Act.

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Speak Up, It's Dark In Here

“Okay. I am always suspicious of new people. Now that I know you're real, who are you, and what can I do for you?”
-Russell Crowe in “A Beautiful Mind”

"They've always tried to help me, but having schizophrenia it was hard to receive the help."
-Robert Lawton

Here are a couple of eye opening facts that I was not aware of until today; it is estimated that about 1% of the population of the world is afflicted with schizophrenia.  This prevalence places schizophrenia as more common than Alzheimer’s disease, multiple sclerosis, or insulin-dependent diabetes.  Approximately 25% of all hospital beds in United States and Canada are filled with schizophrenic patients.  Schizophrenia is thought to be one of the top ten causes of long-term disability worldwide.

Schizophrenia constitutes a group of psychotic disorders which involve severely impaired thinking, emotions and behaviors.  Typically, schizophrenic patients are unable to filter stimuli to their senses such as sounds, colors and other environmental stimuli.  If left untreated, most schizophrenics will gradually withdraw from other people, interactions and eventually lose their ability to take care of the simplest of daily personal tasks. 

An excellent description of schizophrenia, including causes, symptoms, treatments and realistic expectations are available at the U.S. National Library of Medicine.

Regularly I talk about effective patient medication counseling and overcoming the barriers to effective counseling.  This category of medications and patients poses some of the steepest barriers to effective counseling of all the medications.  We get a short time with the patient in the pharmacy, and there is a significant amount of important information to cover in this category of medications. 

It is great when we have a family member or caregiver to listen in and show understanding of the pharmaceutical therapy; however, quite often the patient is on their own.  I feel that this is a perfectsituation for use of the Medication Specific Counseling SessionsTM offeredthrough a membership with AudibleRxTM.  The important pharmacy counseling information about the medication can be listened to on a computer, tablet, iPhone or any internet device with a speaker as many times as is necessary.  If you miss a section, just stop the file and back it up and start over.

We currently have posted counseling sessions on most all of the newer medications used to treat schizophrenia or bi-polar mood disorder.  We also have counseling sessions on many of the medications used for mood stabilization, depression and anxiety disorders.  Please follow thislink to the Medications page to see which counseling sessions are currently availablefor listening.

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