Monthly Archives: August 2017

Do No Harm


“Do no harm” may have been a standard in medicine at one time, but our modern healthcare environment is geared toward maximum profits with less emphasis on quality patient care.  More and more doctors are employees instead of entrepreneurs in today’s healthcare market and to get maximum reimbursement on services rendered, they are allowing insurance agencies dictate the model of care. As a result, patients are getting substandard care and doctors are leaving the field and taking up other occupations.

Do_No_Harm_Heading_800As patients, we tend to forget we are paying for a service. We are consumers of healthcare services but we are treated more like the enemy than the customer. In order to advocate for patients in the past, I have likened healthcare to auto mechanic service. If you put your car in the garage and the mechanic fails to fix the car do you just say “okay”, pay him and accept your broken car? If the receptionist at the auto mechanic’s office fails to communicate that your car was ready on Friday but it’s now the following Tuesday do you say, “okay?” or do you complain about the hardship their incompetence caused you? That may seem silly but it is the same for your body which is priceless compared to a car. So, why do we accept this as the way things are in healthcare and just go on? I would suggest that we are part of the problem.

The chronically ill accept sub-standard service in healthcare because of fear. We need healthcare which makes us a vulnerable group. As sick as we are with RA and all it’s ugly step-sister diseases we are afraid if we complain the doctor will dismiss us as patients, the medical staff will drag their feet even more, and we will be labeled as a difficult patient which can get us blackballed as a potential patient for a alternate physician/group. We fear these things with good cause because they happen but not as frequently as you might think. It is not too much to ask that the standard of care be met. We shouldn’t have to be frustrated, afraid, and voiceless. There are steps we can take that do not involve filing a law suit to make a difference when we encounter problems in today’s healthcare environment:

  1. Understand your patient rights. As the patient, you should always be treated with respect. Good customer service practices should not be lacking in healthcare nor should you be discriminated against based upon your sex, race, or financial status. Many times these rights are presented to us at the point of new service for healthcare but we blindly sign where instructed without reading or knowing our rights as patients.
  2. When a grievance arises, register a complaint with the appropriate manager of the medical office, hospital, or treatment center. These days, physicians rarely own their own practices. That means the physician along with the medical staff are employees of the medical facility.  For example, clinics generally allow 15 minutes per patient in the office. If you spend that time complaining about the billing clerk then you have misused your time with the physician who in most cases can do nothing about your bill.
  3. Consider firing your physician if you are unhappy with his/her services, have fractured trust, or a personality conflict. You have the right to fire your physician. My advice would be to seek and obtain another healthcare provider before firing your existing one to prevent a lapse in prescriptions and to make a smooth transition. You may hear that doctors can “fire” patients, but what that really means is they can refuse care. Refusal of care should never be a threat as that involves manipulating the patient/doctor relationship which is unethical.
  4. File a rating with and/or which are two of the most widely used physician rating and review sites on the internet. You may not receive resolution to your issue but you may help a potential patient steer clear of the trouble you experienced. Physician practices look at these sites. They do not want poor scores because it has a direct impact on their ability to attract new patients. On a positive note, if you have a doctor that rocks then give them a good score on these rating sites.
  5. Register a complaint with your state licensing board for grievous misconduct. A simple online search will provide you with the licensure board information for your state. This type of complaint goes for doctors,  nurses and other healthcare providers who carry a professional license. Complaints are investigated and should the license holder be in violation of negligence, unethical behavior, or a host of other violations of condition of licensure their license may be revoked, suspended, or tagged for disciplinary action all of which can include a hefty fine and/or education courses to correct the deficiency if warranted. When disciplinary action is filed against a physician the mandatory medical malpractice insurance premium is sure to increase significantly for that practitioner if they are continued to allow to practice. If the violation of the license violates state law, criminal charges may also be levied by the State District Attorney.
  6. File a complaint with Medicare at if you are a Medicare recipient and feel your rights have been violated. The Centers for Medicare and Medicaid take complaints very seriously. Medical providers do not want to loose their Medicare contracts! For example, complaints can be filed online with Medicare about:
    • improper care or unsafe conditions
    • hospital conditions
    • your doctor
    • drug errors
    • unnecessary or inappropriate surgery or treatment
    • not getting treatment after your condition changed
    • incomplete discharge instructions and/or arrangements
  7. Write your legislature. As healthcare is being shaped by our government, we need to have an active voice in this arena. Contacting your elected officials about your unique experience with the healthcare system makes you a person, not a number and can help them as they shape law that applies to medical licensure, healthcare insurance, standards of care, and patient rights.

Sometimes healthcare professionals make mistakes that can impact our lives adversely. When should you consider a case for malpractice? When the substandard conduct of a physician results in injury that is a breach of reasonable care. As an example, there are two women who have autoimmune disease in my circle of friends, that have received substandard care. Each have given me permission to give a synopsis of what happened to them for purposes of giving an example of what may be deemed medical negligence.

  • Case 1: After a cat bite to the finger, medical care was sought for a resulting infection and inflammation. The bite was not treated with the autoimmune condition in mind and the inflammatory response advanced to the point surgery was required to straighten the finger. A external fixation device was applied to the finger which the patient had to have adjusted at regular intervals. Again, autoimmune disease was not taken into consideration although the patient’s specialists for said disease was consulted. The fixation device attached to the bone drove infection into bone which resulted in several surgeries to clean out, replace the joint, then remove the replacement. Ultimately the patient had to undergo a amputation of the finger.
  • Case 2:  Patient sought treatment with a pain management doctor who performed radio frequency ablation in two procedures to the nerves in the back as a treatment for RA/OA pain in the spine. Following the second procedure the patient had increased pain beyond the time period of healing. On follow up she was not allowed to see the physician who performed the procedure and was directed to a Nurse Practitioner who failed to perform an examination but instead ordered a drug screen, issued a lecture about pain management, dependency, and suggested counseling when none of these applied to this case. Seven weeks post procedure, the patient went to her orthopedic office and a x-ray of the spine revealed a severe compound fracture about 7 weeks old approximate to the area radio frequency ablation procedures had been performed. During the time the fracture was untreated, a piece of the broken spine migrated toward the spinal cord rendering stabilization with medical cement inappropriate. Twelve weeks post procedure, the patient is in a back brace and the fracture has not healed. The outcome is uncertain.

Although physicians violated the standard of care due these women, to date they have chose not to file a malpractice suit against their healthcare providers. Both have moved on from the physicians who caused them harm and they have shared their stories in support groups on social media and urge others to advocate for themselves in today’s healthcare system. As you can see these cases go beyond that of a disgruntled patient. Each woman has received a permanent injury due to a breach of the standard of care being met. (The standard of care is the treatment that other physicians of equal training would deliver in the same circumstance.)

If we just sit back quietly and accept that sub-standard service is the way of things nothing will ever change.  Somewhere along the way, “do no harm” was pushed aside and a patient focused approach was lost. We stopped becoming the customer along the way. Collectively we can take a stand. This kind of healthcare reform starts with us and what we are willing to accept as appropriate treatment from our medical providers.



Medication Management Part 5: Infusions


Infusions for RA (Rheumatoid Arthritis) may be recommended by your Rheumatologist when oral or injectable DMARD (Disease Modifying Anti Rheumatic Drugs) alone or in combination are no longer effective in controlling symptoms or the disease process has advanced aggressively. Infusions for RA are not prescribed lightly nor should they be. There are significant side effects that must be weighed when considering if these drugs are for you. Often they are not prescribed unless the disease is to the moderate/severe level simply because of the time frame it takes to determine if oral therapy is effective. When oral therapy fails,  more often than not, injectable drugs are then tried in combination with oral therapy before infusable drugs are considered. This can delay infusion therapy considerably.

There are four drugs that are commonly infused for RA at present. They are all types of manufactured proteins but they all work differently. Your Rheumatologist will determine which is the best course of treatment for you based on your past response to oral and injectable therapies.

  • Orencia -used to suppress T-cells.
  • Actemra – used to block interleukin-6 (IL-6).
  • Remicade – used to as a TNF Inhibitor.
  • Rituxan – targets mature B-cells.

Now that you know about the main types of infusible drugs and their action, you can see that they don’t work the same which is why you might find yourself being prescribed a different infusion if another is not working to control symptoms well. Orencia and Actemra were originally available as infusion only but in recent years have been made available as a home injectable. Your doctor may still prescribe the infusible version for a variety of reasons some of which may be dictated by your insurance. Unfortunately payment often dictates where, when and how you will receive advanced treatment for RA.

All infusible drugs for RA are very expensive. A article from 7/14/17 gives an estimate that cost of these drugs per year are $36,000 to $47,000 on average. This estimate does not include the fee for administration which can double the cost in some cases. Due to rising costs, most infusions for RA are given at infusion labs on an outpatient basis.

Once the infusion has been ordered and prior authorization has been met by your healthcare coverage, the next step in infusion therapy is getting ready for the infusion which may include:

  • Referral – Your Rheumatologist will refer you to a infusion lab for your treatment. This lab may be a stand alone clinic, it may be located in a physician office building, or it may be located within a hospital. The majority of infusion labs are set up with reclining chairs in a common area with multiple patients receiving treatment simultaneously.
  • Immunizations – Carefully consider getting the flu and/or pneumonia vaccines prior to starting infusion therapy if your therapy starts during flu season between September 1st – February 28th. Infusions squelch immunity to the point that getting the flu and/or the complication of pneumonia can be life threatening.
  • Consent – Your Rheumatologist may or may not ask you to sign consent forms for the infusion. This is an agreement between you and your doctor that you understand the therapy and possible side effects.
  • Understand Frequency – Each of the infusion therapies have their own schedules (frequency in which they are given) which your doctor should review with you so you will know what to expect for purposes of time off work, scheduling child care, etc… For example, my Rituxan is given twice a year in a set 14 days apart. I just finished my June/July set and my next will be Dec/Jan. My best friend, who has advanced RA, receives Remicade every 8 weeks.
  • Patient Education – many infusion labs are now requiring patients to take a education course  about their therapy with a trained professional. If this is dictated by your insurance, it is not optional.
  • Understand Adverse Reactions – Reactions to infusion therapy for RA do happen. Often times, the infusion rate only need be slowed down and perhaps additional medication given. In order to alert your infusion nurse of any signs of a infusion reaction, you need to be aware before the day of infusion what to expect.

On the day of the infusion:

  • Positive attitude – Arriving with a positive attitude will make for a more pleasant experience for you and your infusion lab mates, lowers blood pressure, checks anxiety, and helps prevent stress induced flares.
  • Hydrate – Arrive at the infusion center well hydrated for easy of placing the IV site. Dehydration causes veins to flatten making it difficult for the nursing staff to start the IV site which may lead to multiple, painful, unwanted needle sticks. Dehydration also causes nausea which may be compounded as a side effect of the drug therapy.
  • Expect your blood to be drawn – As a precaution, simple blood tests are done prior to the infusion to make sure you are healthy enough for the infusion. (Being well hydrated the morning of the infusion aides with the lab draw too.) The infusion nurse will review the lab work and determine if it is safe to proceed with the infusion. If for any reason your infusion cannot be given because of your lab values, understand it is for your safety.
  • Take your oral medications as prescribed – It is not wise to hold any of your medication or take medication not listed on your medical record on the day of infusion. Advise your infusion nurse of any change to your medication regimen prior to start of infusion. It is wise to bring a current list of medications including: name of medicine (both prescribed and over the counter), medication strength, and time of day you take the medication along with a list of allergies for your infusion nurse. If you need to take any home medication during the infusion, please have the medication on your person as most infusion labs do not dispense home meds; however, you do need to make your infusion nurse aware of what you are taking and why.
  • Have a driver – Often anti-nausea meds and/or Benadryl are given prior to the infusion to counteract anticipated side effects. These may cause drowsiness making it unsafe to drive after the infusion. The infusion may cause you to be unexpectedly tired and having someone to drive you home is a blessing. Many infusion labs will not allow you to drive yourself home.
  • Dress comfortably and in layers – Your infusion nurse will need to be able to raise your sleeves for placement of the IV site and may also need to monitor blood pressure or perhaps place heart monitor leads for your infusion. Some infusions take several hours so being comfortable is important. The temperature of the infusion lab may not be to your comfort level so be able to adjust your clothing by taking off or adding layers; however, chills should be reported to the infusion nurse right away.
  • Be considerate of your infusion mates – Don’t wear perfume as many people are allergic and strong smells can cause those getting chemotherapy to become nauseated. Don’t talk on your cell phone and quiet the ringer – The infusion lab should be calm and quiet to allow the infusion nurses to observe patients for emergencies without distraction.  Keep conversation pleasant, light and quiet as many patients nap. Controversial subjects should be avoided.
  • Come prepared – Bring things to pass the time (electronic devices are okay as long as the sound is off and/or headphones are used), bring a pillow/blanket if these items not provided by the infusion lab, bring your own drinks/snacks (food is not encouraged as the smell can trigger nausea for some patients but dry snacks are okay). In most cases the infusion lab will have coffee, water, ice, snack crackers but check to be sure if your infusion is over meal times.

I hope you have found this series of articles on medication management helpful. This is the last entry in the series. Other articles in the series discussed management of prescriptions and refills, cost of medications and real resources for help, how to use a medication planner, and injections used in the treatment of RA.





Managing Medications Part 4: Injections for RA


“Injections?” you may squeak as the rheumatologist tells you that you need to start a regimen of self injecting medication to treat your rheumatoid arthritis (RA). Perhaps the recommendation for injectable drugs was on your first visit to the rheumatologist or a subsequent visit or you are facing this now. At some point in your treatment plan you will learn that injections are a prominent part of treatment for many RA patients. It is a decision we all face at some point or another as these drugs are making great strides in slowing the progression of illness. There is currently no cure for RA.

For many people with RA the thought of self injecting medications is scary. After all, these medications are not your average drugs. Many are introduced to Methotrexate (MTX)  injections first as a injectable treatment if the oral tablets are causing gastrointestinal upset. The first rheumatologist I saw wanted to start me on MTX injections on day one. My reaction? I got a second opinion because I was so flabbergasted! I am glad I got a second opinion, but I now know that starting MTX early is acceptable when the RA is acting aggressively. Back then, all I knew was MTX was chemotherapy in my world as a oncology nurse and I wasn’t jumping off that cliff on day one. A lack of education could have saved me years of treatments that did not work because when caught early and treated aggressively, RA can be slowed or even suspended in remission.

Enbrel was my first injectable medication for RA. It is a biologic which is a drug that is made to specifically target certain cells in the immune system to help prevent inflammation. Specifically, Enbrel is a TNF inhibitor. It works to block the tumor necrosis factor of the immune system. Even as a nurse, I did not understand the in’s and out’s of the immune system to this level. Tumor? Necrosis? To me, tumor was equated with cancer and necrosis means death of tissue. And I was going to inject this? LOL! Sometimes being a nurse isn’t the best thing when nurse become patient. I share this so that you will know you are not alone and to acknowledge the fear of these treatments is real, even for nurses, but it can be overcome with education. My fault was that I had injected insulin as a diabetic for years and assumed I knew the ropes with self injecting. I did not when it came to these specialty drugs. I had to learn.

Drugs such as Enbrel and Humira are often first line biologic agents when the oral disease modifying anti-rheumatoid drugs (DMARD) alone are not controlling the progression of illness. I had to do my homework before I began biologic therapy to educate myself so I would feel comfortable with treatment.  My rheumatologist was the cornerstone of this self education, but I also used reliable web sites, and I asked other RA patients about their experience with this medication in Facebook groups for RA patients. As I learned more, I began to get more comfortable with the idea of biologics and you will too. Below is a photo of the Enbrel auto-injector, which is a prefilled pen with a needle tip that you pop off and press the button to give yourself a shot. This delivery method is the most simplistic to use and because of the design it allows you to give the drug in the privacy of your home instead of having to go to the rheumatology clinic for the injection.



In consideration of biological therapy we must weight the side effects that the drug can present. These are highly specialized drugs. When you mess with the immune system one major side effect is opening yourself up to infection. That alone is a scary side effect, but when you start reading the list of side effects for Enbrel, as an example, you will see convulsions, chest pain, difficulty breathing are among the severe reactions. A list of reactions can give you pause, but I had to weight my thought of “do I really want to go down this road?” or face the alternative of rapidly advancing disability. For me, starting therapy was the best choice as my RA was behaving aggressively and had failed to respond to oral medications alone.

Once you commit to self injecting a medication you may face the fear of the injection itself. Will it hurt? Can I do it? What if I can’t do it? What if I mess it up? All of these questions are valid and normal. You should discuss them openly with your rheumatologist. Many rheumatologists offices have sample auto-injectors you can handle to get familiar with the way they work and practice using them. The nurse is often the one to walk you through this education. Once your prescription is filled, you may be asked to come to the rheumatology clinic for your first injection so they can walk you through it to answer any questions you have and to help you learn the technique. To reinforce your teaching, the package insert in the medication that has step by step instructions with pictures that is often accompanied by a video link you can watch to see how to give the injection. I should caution that reading the package insert and/or watching a video should never be substituted for hands on training in your doctor’s office. If you do not feel comfortable giving yourself the injection, inform your prescribing doctor and make arrangements to receive your injection in the office until you are confident you can do it yourself.

Not all injectable medications come in auto-injectors. Some of them come in prefilled syringes, such as Cimzia, as seen below.


The syringes are designed for an arthritic grip and have the advantage of allowing you to control the rate at which the medication enters your body by the pressure you place on the plunger. When using an auto-infuser the medication is delivered swiftly with the push of the pen button. As a nurse, I preferred the prefilled syringes, but I know they aren’t for everyone. It takes education, preparation, and practice to become comfortable with prefilled syringe injections, but you can be taught easily.

Injectable biologics are given subcutaneously which simply means that the medicine is given in the fatty layer of tissue instead of the muscle. Because the drug is to be given in the fatty layer, the pen tips or needles are often fine and short. This minimizes the risk of hitting muscle or a blood vessel. In my experience, Enbrel and Humira stung on injection like a bee sting but it did not last. This sensation was alieved by removing the medication from the refrigerator about 15 minutes prior to injection and letting it come closer to room temperature before injecting. In addition, I slightly iced the area to be injected right before using the auto-injector to numb the skin. Caution should be taken if using these tips not to leave medication out of the refrigerator more than 30 minutes and not to ice the area to be injected more than 5 minutes and to never apply ice directly to the skin. When I shifted to Cimzia, Orencia, and Actemera injections I did not have any burning on injection as these were all prefilled syringes and I could give the medication slowly. Because I was able to control the speed of the injection, it did not burn so I did not need to follow the steps above.

Methotrexate is not a biologic, but an antimetabolite that is considered a disease modifying anti-rheumatic drug (DMARD) when used for RA. It is not understood how MTX works on the immune system, only that is does alter it in some way to reduce inflammation. MTX comes in auto-injectors and vials that you can be taught to use to draw up your own dose.

Regardless of the injectable drug you may find prescribed, do ask questions of your medical staff, conduct your own research, and utilize RA support groups to gather information from others who have used the medication. Only you can decide if injectable medication is a course of therapy for you. Your prescribing physician and medical team should be supportive in your learning process. If you do not feel you have adequate preparation and you have voiced this to your medical team without any consideration, then I would recommend shopping for another healthcare provider.

The next installment of this series is about infusions. Last week, I gave links for real help to assist with the cost of these very expensive medications used to treat RA. Please leave a comment or ask a question, share on social media, and give me some feedback. I hope this series has been beneficial to your healthcare.



Managing Medications Part 3: Med Box Planner


Setting up a medication box planner is the easiest way to manage your routine medications. When I was working as a nurse, we encouraged patients with polypharmacy (taking more than 5 medications daily) to set up a med box for safety purposes as it is easy to forget a dose or double dose. When you use a medication box planner, you can just go look at the planner and know from the empty or full slot if you have taken your medication. As a patient, I find this very helpful. Days seems to run together and it is hard for me to remember if I took my meds in the morning or was that yesterday morning? With the med box planner there is no guessing. Easy-peasy!

Medication boxes are designed to hold your medications for a week at a time and have little bins labeled with the day of the week. Theyare made of plastic in most cases and are fairly inexpensive costing $1-$7. Some med box planners hold meds for routine daily dosing, twice daily dosing, , and four times a day dosing (also used for three times daily dosing).


In addition to helping you manage your daily dosing of medications these planners will help you manage your refills with your pharmacy. How so? When you sit down weekly to fill your planner, you will know immediately when you will run out of medication because you won’t have a sufficient amount to finish the bins for the week or so few in the bottle you know you can’t fill the planner for the upcoming week.

When I sit down to fill my medication box planner, I try to limit distractions. You want to be alert and make sure you don’t leave a drug out of a slot or that you don’t accidently fill a slot with double the medication. I turn the TV off and I don’t answer the phone while refilling the planner as I have been distracted before and lost where I was in my process of filling the planner.  I take 23 pills a day routinely. My med box planner is FULL and many of my medications look alike so I have to pay close attention when filling my med planner. I keep all my routine medication bottles in a decorative box. I take one bottle from the box at a time, fill the planner, then I set that bottle beside the decorative box on the table. If I know I need a refill, I set the bottle in a different location to the far right on the table so I don’t forget I need to take care of that one. By using this method, I don’t get confused as to what is in my med planner and what is not. I know the medications in the decorative box have not been loaded in the planner, that the bottles on the table along side the box have been loaded in the planner and those set to the far right need refills. Once the planner is loaded, I return all the bottles except the ones requiring refills to the decorative box and put it away.

While filling the planner, you may run out of medication. This can be confusing if you run out of several prescriptions. For example, I may run out of my diabetes medication on a Thursday and my antidepressant on a Friday and a cardio med on a Monday. How am I to remember where to put the meds when I get my refill from the pharmacy? I came up with a simple reminder when I was filling med box planners as a Home Health nurse. I simply write the name of the drug on a slip of paper and place that slip in the first empty slot for that day. Since I always fill my box on Sunday, I know that I am out of my diabetes med until Saturday as the box is labeled Sun – Sat from left to right. I always encouraged patients to load their boxes on Sunday for this simplicity of filling. Should you choose a different day, you can put a slip of paper labeled with the drug name in each slot that is missing your drug. See photo below for an example of how I manage empty slots in my med box planner.


Once my med box planner is loaded, I make sure that the lid snaps tightly on each bin. I have had bins pop open when shaking out a dose which made for a difficult sorting! I place the bottle needing a refill on my desk so I will be reminded to call the pharmacy Monday morning to order my refills. When I get the refills, I add any remainder of meds in the old bottle to the new bottles, then I strike out my name on old bottles and discard them in the trash. The new refilled bottles go in the decorative box.

The method described above is the easiest, safest way I have learned to manage 23 pills a day. Those are just the routine meds. What about the as needed medications like pain pills, muscle relaxers, topical creams? I keep these medications in one location. I live alone so there is no danger is children getting in my as needed medications. If you live with others, you may wish to consider a locked medication box to store these meds for safety of your children and to prevent theft.  Once I use an as needed medication, I place a small post-it note on it with the date and time I used it. This may seem tedious, but when you take a variety of as needed medications and you can’t think because of pain levels, it is easy to forget. You might say to yourself, “Did I take the muscle relaxer last or the pain medication?” and accidentially overdose. According to the CDC, “Opioids were involved in 33,091 deaths in 2015, and opioid overdoses have quadrupled since 1999”.

The key to responsible prescription medication dosing is safety: safe dosing for yourself, safety against accidental dosing of others and protection against theft. According to Time magazine 70,000 kids overdose each year and are rushed to emergency rooms because they took medications that were within reach! CBS news reports that the top 5 drugs that teens steal are: narcotics, stimulants, sedatives/tranquilizers, sleep aids, and cough meds with DMX. When working Home Health, I cannot tell you how shocked I was that family members would steal medications from the home bound adult. Doctors are very reluctant and will often refuse to refill a prescription that was “stolen” as this is a frequent excuse from patients who are abusing their prescription medications. It is best when you live with others or have a lot of traffic in your home to place your medications under lock and key.

I hope you are enjoying this series on Medications. in the coming weeks I will be discussing Injections and Infusions related to RA. If this is your introduction to the series, there are two prior blog entries about Refills and Cost/Assistance.