Category Archives: Autoimmune Disease

Maintaining An Accurate Medication List

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In my five part series on medications I briefly discussed the importance of having a medication list. I did not properly express how important to make sure that list is reconciled with your electronic record.  It is only recently that I went through a situation in which I learned this lesson the hard way. In short, my electronic record caused two family practitioners to reject me as a new patient when my Internist died suddenly in July.

Med List Check Off Photo

Let’s face it, those of us with multiple chronic illnesses take a lot of medications. My med list fills a sheet of copy paper when printed. It is time consuming to update the list at the physician’s office so I always provided a printed list of meds to the nursing staff each visit to save time and assumed they were updating the electronic record but in reality they would get bogged down with it because the list was long and had too many meds to cross check against the electronic record. They had to go grab the next patient, take lab samples, and my list got put aside and then forgotten in the rush of the day.

I always knew what medication I was taking. My doctor knew what I was taking. So what if the nursing staff didn’t have it right in the computer system? As a retired RN, I have a working knowledge of medications and interactions. So, no big deal, right? Wrong! Two family practitioners rejected me as a patient based on my complicated inaccurate medication list after my PCP died. Had it not been for the kindness of a doctor I use to work with as a nurse, I would still be searching for primary care. I am pleased to report when I saw him as a patient for the first time last week it was equally important to his nurse to make sure my medication list was accurate and we got it fixed!

Making sure the electronic medication record is correctly reconciled to your home list is very important for reasons far greater than my snafu in finding a new PCP. The whole goal of reconciling it is to prevent medication errors one of which is FATAL drug interactions. Every physician’s office and hospital are required to accurately record your home medication list. This can be tiresome, but it is for your safety.

I saw evidence of a serious drug interactions first hand in my nursing career. My most memorable experience was a female, middle age patient who was admitted to the hospital in acute renal failure. She had no underlying kidney disease. The doctors were stumped. It was a specialist who asked, “Did you tell the nurse about ALL the medications were taking, including herbs, vitamins, and supplements?” and her response was a “No”. Her husband brought in a 13 gallon trash bag half full of herbs and vitamins she was taking regularly thinking she was doing everything she could to be healthy. Unfortunately, there were several toxic interactions between the herbs and prescription medications that were killing her kidneys requiring emergency dialysis to get the toxins out of her blood not only to safe her kidneys but her life.

In another case that could easily happen to any of us occurred when a friend of mine was experiencing some new symptoms and saw the Nurse Practitioner at the primary care physicians (PCP) office. A few sample boxes of a new medication on the market was given. When my friend developed complications and a reason could not be discovered, a specialist was sought. After a round of additional testing still there was not a reason found for the symptoms. It wasn’t until the specialist looked at the medication record scanned into the electronic record from the PCP to find the potentially fatal interaction between the newly marketed sample medication and a long term medication on my friend’s medication list. My friend had not listed the samples on the specialists new patient paperwork. The medication regimen was changed and I’m happy to say my friend is doing well.

So, what can you do to make sure the medication you take at home matches what is on file in your electronic medical record? Here are some ideas:

  1. Take a written list of medications to each physician’s visit. Include ALL medications including those prescribed, samples, over the counter medications (like Tylenol, antacids, and cold medicines), herbs, vitamins, supplements. Make note of any changes in your medication regimen since your last visit. When writing your medication list, be sure to write down the exact information from your prescription bottle. (For example: Ranexa 500mg. Take 1 tablet orally twice daily.)
  2. When the nursing staff goes over your medication list I recommend you do not give them your list until you have gone over it together. First tell her/him about any changes and be patient while each are updated in the electronic record. Then ask her to read the list on the computer screen while you check off the medication with a pen on your list.
    • Ask him/her to add any medications, including over the counter medications, herbs, vitamins, and supplements that are on your list that were not read off.
    • Ask him/her to delete any meds read off that are no longer on your list.
  3. If you have access to your electronic record through a patient portal, use it regularly to verify that the medications listed there match your actual regimen.

Because of the lack of understanding by the public about the importance of maintaining a accurate medication list, many physician offices are requiring that you bring all your prescription and non-prescription medications to each visit so they can read the bottles themselves to verify the prescription, especially when prescribed by a different practitioner. My cardiologist requires this practice.

In some cases of long term prescription narcotics for chronic pain conditions, the prescribing physician is requiring the prescription bottle be presented on each visit where it is inspected for date of prescription and the remaining pills are counted and the patient is asked to give a urine sample for drug detection to verify what was prescribed shows up on the drug screen results as people are selling their narcotics on the street instead of actually taking them. The urine drug screen will also verify if the patient is taking any other narcotics.

So, drag those prescription medications, over the counter medications (including seasonal allergy medications, heartburn medications, and aspirin), vitamins, supplements, and herbs out of the bin you keep them in and put your pen to paper. Hundreds of thousands of drug interactions hospitalize Americans each year. Don’t let yourself be one of them through miscommunication about your medication regimen at home.

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Impact of War on Opioids

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War On Drugs

The impact of the USA’s war on opioid prescriptions for pain has come home to me in an unexpected way. In July 2017 my primary care physician, Dr. Ignacio Gonzalez, MD – Internal Medicine, died suddenly of a heart attack. Dr. Gonzalez and I were once colleagues at the hospital in which I served as a Charge Nurse for the Oncology and Renal floor. He served as my primary care physician for a number of years following my case as my health deteriorated and I was forced into retirement by disease and pain. As part of my overall healthcare he prescribed my pain medication. Now that he has passed away I cannot find a family practitioner to take my case among his colleagues. In the denial for primary care within the practice I was told, “your case is complicated and the doctor does not prescribe opioids” by one practitioner whereas another just flatly rejected me with no reason why.

Wow! Right? I was shocked, angry, and felt betrayed by a agency I trusted and had a wonderful working relationship with the physicians there when I was a nurse. I have been retired due to disability since 2011. A lot of the available family practice doctors are new and do not know me as a nurse. The first physician that declined my case based upon my medical record flatly does not prescribe pain medication. When I countered that I would seek referral to a pain management doctor, my case was still denied, which made no sense to me until I realized how my medical record must look to them. Gone are the days when you have a sit down with a prospective doctor. You are evaluated on your record. This is why it is so important to make sure that information is up-to-date and correct!

I had to acknowledge I look bad in black and white on my medical record because of my drug allergies, medication list and a history of chest pain. My record raises a red flag to medical providers that I may be a “drug seeker”. How? As a nurse, I know the first thing a patient seeking drugs will claim is they are “allergic” to Lortab (hydrocodone) and/or Morphine. This complaint of pain is usually “chest pain” which they have learned will get them IV push medication until the doctors sort out the EKG and other findings to prove or rule out said “chest pain”.  When drug seekers falsely claim allergies to get to Dilaudid, 10 times stronger than Morphine, the system is abused and causes medical providers to become jaded. When someone like me honestly presents with these conditions, allergies and medication list containing opioids I very much fit the profile of “drug seeker”.

What am I to do? I wish I knew presently. The Internists associated with this medical practice are full up not accepting any new patients. With the Family Practitioners denying my case, I am currently being bounced around between my specialists: Endocrinology, Gastroenterology, Cardiology, Rheumatology, Oncology. To top it off, I have had a fungal urinary tract infection for two months following my last Rituxan infusion for Rheumatoid Arthritis. The Rituxan drastically depletes B-cells in the immune system to lower symptoms caused by the RA. As a result of lowered immunity, I have developed a infection that did not respond to the course of treatment. With no PCP, the Endocrinologist who discovered the infection is having to refer me to a Urologist … another specialist to add to the heap. Since Dr. Gonzalez died, I have had three medical procedures by specialists with no one to put the pieces of my symptomology together because loosing your PCP is like losing the ruder of a boat .. without anyone to steer the boat it turns in circles or runs a ground. That is what is happening to my healthcare management as I am a poor ruder!

As far as my current opioid prescriptions go, the medical practice is having Dr. Gonzalez’s colleagues honor his prescriptions for 3 months, giving the patients time to find alternative care.  When a physician dies, all his current prescriptions become null and void meaning that the refills have been cancelled at the pharmacy.  I have been stretching my pain med patches from the 7 day prescription to 12 days to try to make them last as long as possible, which is ineffective in battling my symptoms. My flares have increased from 1 per 6 month period following Rituxan to 3-4 and I’m only half way through my cycle. The next infusion is not until late December. As we all know, stress is a contributing factor to the flares. I cried over the loss of my dear physician and then I’ve bawled over the rejection of his colleagues and then got so angry I had chest pain as a response to the injustice of it all! This has been truly maddening! I know Dr. Gonzalez, may God bless his soul, must be horrified at what is happening to his patients.

I am in a holding pattern waiting to see if one of the Internal Medicine doctors who knew me as a nurse, will take my case. Believe me, I know how lucky I am to have that nurse/doctor relationship to draw on in my healthcare as a trump card. I have never exploited that relationship because of such respect I have for the position.  Should this Internist refuse, my only other option is to go outside the practice which will fracture my healthcare between multiple disciplines. This means I will have to find not only a new PCP but a Pain Management specialist as I am not likely to find a PCP until it is clear that my opioids are being prescribed by Pain Management to relieve a PCP of the obligation. In addition I am going to have to find one of my specialists to make a personal referral so that the new PCP I seek will know that I am a legit patient with true allergies and medical conditions. They don’t have time to do this but without it I don’t see my situation improving without a personal referral vs. submission of my chart only by medical staff.

The federal agencies that impact opioid prescribing (such as the DEA, FDA, CDC) are wanting to phase out opioid prescriptions for non-cancer pain. The CDC even has a one page bulleted poster for physicians recommending their plan for chronic pain patients which involves therapy, non-narcotics, and limiting prescriptions for chronic pain to short term use! We don’t have a voice in this war against opioids because there is NO research in chronic pain because it HAS NOT BEEN FUNDED but there is plenty of research on the number of deaths caused by opioid prescriptions. Consider this map from the CDC:

War On Drugs Death Map

I fear my story and others (https://themighty.com/2017/08/war-on-opioids-prescription-drug-addiction-affects-chronic-pain-patients/) will fall to the wayside in the war on opioid prescriptions. Those who abuse prescription drugs will continue to do so, finding a way, while those of us who truly suffer from daily pain will be left with no legal recourse unless moving to a state where cannabis is available.

I will be writing my state legislature to tell my story as a way to advocate for myself and others like me. I would urge you to do the same. Unless we are willing to stand together and make our voices heard we will succumb and be the silent victims in the war against opioid prescriptions.

Update: After posting this blog entry to my personal Face Book page, I received a FB Private Message from a physician in the medical practice of my deceased physician who kindly agreed to take my case. I praise God because I did not know what I was going to do for primary care. I have prayed about this situation for weeks and so have my loved ones and members of my church family. I understand how fortunate I am to have the nurse – doctor relationship and how that influences my care. I can’t help but to think of all those who don’t have that connection, who are left out because of questionable allergies, opiates on their med list, and have chronic illness. Where is their voice? Please write your legislature. No one else is going to stand up for us if we don’t stand up first.

 

 

 

 

 

Do No Harm

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“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 healthgrades.com and/or vitals.com 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 medicare.gov 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

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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 http://www.sciencedirect.com 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

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“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.

enbrel_pen

 

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.

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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

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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.

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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.

Managing Medications Part 2: Cost/Assistance

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Once you are diagnosed with rheumatoid arthritis (RA) and/or other autoimmune (AI) diseases you will quickly become overwhelmed with the cost of medication treatment regardless of payment status unless you are independently wealthy. In this article, I hope to give you some practical advice to help you manage those costs. There is help out there, but you need to be a detective. It isn’t always easy to find and there are plenty of scammers waiting to take advantage of your venerability, lack of knowledge about patient assistance, and capitalize on your fear.

The most extravagant cost in the treatment of RA or other autoimmune disease are the injectable biologic and infusible chemotherapy agents. The cost can be upwards to $10,000 and $30,000 per year on average, often costing thousands in co-payments. Currently, my Rituxan treatment is $16,000 per infusion for four infusions per year costing $64,000 per year which is three times my Social Security income. Without assistance from the foundation for the oncology office where I receive my infusion on my Medicare co-pay, I could not afford this treatment. I praise God for this assistance because in seven years of seeking treatment for RA, Rituxan is the only drug to have a significant impact on my symptoms.

If you have commercial insurance, the best place to start for co-pay assistance is the website for the medication and/or the drug manufacturer of the drug you have been prescribed. Often, they have co-pay assistance cards with online applications or applications you can print and send to your doctor. Sometimes the doctor will hand you a co-pay card or brochure in the office, but that may not always be the case. Do your homework. I used these cards when I was commercially insured when prescribed both Enbrel and Humira for a significant cost savings. If you are underinsured, there may be a different program to get the cost of your drug covered. Don’t stop at the discount card program, but look deeper or talk to a customer service representative to see if there is an assistance program for you. I was able to get my Orencia prescription at not cost to myself because I was underinsured and qualified for a mail-order prescription program directly from their patient assistance program.

Medicare patients will often find themselves not eligible for drug discount card or manufacturer assist. You will need to read the fine print on the card or on the manufacturer website to verify coverage. Should you not be eligible for assist on your first inquiry don’t give up. As I stated in the paragraph above: search the manufacturer website and/or call customer service and ask if there is a payment assistance program for you as a Medicare recipient. Sometimes these drug manufacturers have foundations to help with drug costs for Medicare patients. Genentech provided my Actemera injections free of cost for a year while I was on Medicare because I met their income guidelines and was persistent in searching for help beyond the initial offering.

Uninsured patients may have a more difficult time finding coverage for injectable or infusible drugs. Some states have extended Medicaid coverage that may help, but the majority do not. In my home state, of Oklahoma, you have to be so far below the poverty line you are practically homeless to get Medicaid only benefits unless you have a qualifying illness such as renal disease requiring dialysis or certain types of cancer. RA and other AI disease are not covered. Still, follow the recommended advise above because drug manufacturers will often have foundations to cover the uninsured but it is rare as the Affordable Care Act requires some type of health care coverage.

Beware of drug assistance programs that over broad percentages off your total prescription cost or offer to help you find the aforementioned assistance programs. Many of these sites look free but they will charge a recurring fee on your credit card and are nearly impossible to get out of without cancelling your card, stopping payment at the bank, etc. I personally do not recommend these because if they are legitimate, they most likely will not cover the cost of injectable or infusible drugs but are reserved for commonly prescribed oral prescriptions.

If you find you can’t manage the overall cost of your co-pay or find yourself uninsured and need help, please check the following websites. These are ligitamate help sites; however, given the time of the year you seek assistance, they may be out of funds for your disease or medication. Check back periodically or speak with a patient care advocate for an estimate of when they will receive funding or if the program is being cut.

  • The Assistance Fund – tafcares.org
  • PAN Foundation – panfoundation.org
  • Caring Voice – caringvoice.org
  • Patient Advocate – patientadvocate.org

As of July 28, 2017, the following websites offer assistance for the medication listed:

  • Enbrel  – enbrel.com/support/sign-up
  • Humira – humira.com/humira-complete/cost-and-copay
  • Cimzia – cimzia.com/signup
  • Xeljanz – pfizerpro.com/products/xeljanz/ra/support/cost-assistance-programs
  • Orencia – orencia.bmscustomerconnect.com/orencia-co-pay-assistance
  • Remicade – janssenprescriptionassistance.com
  • Actemera – Genentech-access.com
  • Rituxan – Genentech-access.com

In addition to these tips, do always check with your pharmacist to see if they are aware of any patient assistance for medications. Your pharmacist may not be able to help you with injectable or infusible medications for RA, but he/she may be able to direct you to assistance for other oral medication supporting your autoimmune diagnosis. For example, during a time I was underinsured my pharmacist helped me get a very pricy anti-depression medication through the $4/month program at Wal-Mart.

I also receive “Extra Help” on my drug costs through Social Security. Depending on your income and expenses, you may receive a certain percentage of help. Although I receive 20% help on my prescription costs in combination with Medicare, this qualification eliminates the donut hole which is a substantial cost savings! When discussing this with other Social Security recipients, I find they do not know about this help. You can check it out at  https://www.ssa.gov/medicare/prescriptionhelp/. This webpage will also help you find your state advocate for helping you determine the Medicare Part D program during the enrollment period that covers the majority of your drug costs and it is completely free.

Managing Medications – Part 1: Rx & Refills

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When you are chronically ill, managing medications can be a chore. Fatigue often plays a part in brain fog which makes it difficult to manage multiple prescriptions that you take routinely and as needed. Often it can seem like a chore keeping up with refills and the dosing regimen. Having a system that works for you is essential to preventing accidental missed doses and over dosing or running out of medication.

A good way to routinely get your refills that works with your prescribing physician(s) is needed. Many doctor offices request that you have your pharmacy fax the refill request while others ask you use their online patient portal (patient website) while others require a phone call to the office and/or leaving a message on the nurse phone line. If you obtain medications by a mail order pharmacy, you will be required to follow their rules for refills which may require mail in forms, 90 day prescriptions, paper prescriptions.

Who knew getting a refill could be so complicated, right? The game changer here is prescription medications that require a paper prescription. These would controlled substances. Depending on the type of controlled substance, your physician may be limited to a 30 day prescription at a time with no refills and required to send the paper prescription with you to the pharmacy vs. faxing or calling in the order. You will be required to maintain routine office calls to continue to receive this type of prescription.  If you take a medication for pain that is on the controlled substance list, such as Lortab, you will have to coordinate with your physician office how to manage subsequent prescriptions of the same drug.

As for non-controlled drugs, ask each medical office what their preferred method for refills is to cut down on confusion and frustration. Since I have multiple specialists, I started out by writing a note like, “Pharmacy to fax refill” in my address book. Now that I have transferred my address book to my smart phone, I write the note in my contact list and it serves as a quick reminder to ease communication for timely refills.

I cannot stress the importance of using ONE pharmacy! There are patients who are addicted to prescription medications who use multiple pharmacies in order to hide that they fill multiple addictive prescriptions. Sometimes, people don’t even realize the danger because they use the pharmacy closest to the prescribing physician office for convenience and/or they use several pharmacies in their home town.

Polypharmacy is a term used to describe the practice of taking multiple medications, usually more than 5 prescriptions a day.  Most of us with chronic illness fit that label. When you take a lot of medications, it is a very dangerous practice to use multiple pharmacies as pharmacies check your current medication list against any new prescription for drug interactions and known allergies. There are MANY medications that can be dangerous, even life threatening, when taken in combination!

With the opiate addiction problem in the USA there many states are adopting legislation for pharmacies to share your medication list in a state database so you can’t abuse prescriptions. Sadly, using multiple pharacies even if you are not addicted to prescription medication can get you labeled as someone who is a “drug seeker” as this practice is common among addicted patients.

I personally use a pharmacy that has a drive through located in my home town. I like the drive through because during cold and flu season or an outbreak of infectious disease, I am more protected from illness in my car vs standing in line inside the store. For those of us that are immunocompromised, it is essential we stay away from crowds of sick people. I also know my pharmacist and feel that I can ask him anything about my medication regimen. It is important that your pharmacist have time to consult with you so that you understand your prescription(s). So, in chosing a pharmacy be sure to consider your immune status and think about those pharmacies that have drive through windows, home delivery, or mail delivery.

I hope you have enjoyed this first article on medication management. Be sure to look for the next articles in this series in the coming weeks: Part 2 – Cost; Part 3 – Med Box, Part 4: Injections, Part 5: Infusions.

Rituxan: The End of the Road

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Greetings from my world post Rituxan infusions! I started Rituxan in August and received two loading dose infusions 14 days apart. Rituxan works to deplete B-cells in the battle of autoimmune disease. I am seven weeks post infusion and I am feeling so much better. For the 1st time since I was diagnosed in 2009, I feel that I am on a treatment that has made a significant impact on my disease process but it took coming to the end of the road! Rituxan was the drug of last resort in my treatment as I have tried almost all the known treatments available to me. My next infusion is in late January 2017. The Rituxan infusions will be every six months as needed with weekly injections of Methotrexate.

From May – August of 2016 I was walking through hell as my diseases exacerbated and my treatment failed on Actemra. We’ve all been there: the sleepless nights, the worrying if this is your new reality for the rest of your life, the unbelievable pain, the impaired mobility, and the depression that threatens to swallow you. My seronegative rheumatoid disease and it’s ugly step-sisters were all aggravated in turn causing my diabetes to spiral out of control with blood sugars averaging 400+, and all of that tripped off my heart issues causing episodes of angina.

I saw my cardiologist in May, shortly after my 49th birthday, and he put his foot down and told me I HAD to get the autoimmune diseases in check or I was going to have a heart attack!!! That was very sobering. As I have mentioned in previous blogs, I was disgusted with the rheumatology care in my area. As a result I had seen my Internal Medicine MD and an Oncologist to manage my rheumatology care for the last year. My cardiologist told me something had to change. The pain and inflammation was too much and was stressing my heart. He also told me that the diabetes treatment needed adjusted. I left there and made appointments with my Endocrinologist and Oncologist.

Mind you I was seeing the Oncologist for management of the Methotrexate. He agreed to take me on working with my primary care Internal Medicine MD. Incidentally, he treats my Mom for her cancer, so him seeing me was a kindness. He is a Christian man and an overall stand up guy and I appreciate his willingness to help! However; my disease was advancing again and reeking havoc on my body. He told me that I was time for the Rituxan treatments and set me up with an appointment with a local Rheumatologist as a consultation for the use of Rituxan stating he had to have the input of a Board Certified Rheumatologist. That made sense to me and was fair.

My Endocrinologist was not happy with my A1C level at 12.3. Ideally, that number should be below 7. We made some adjustments in my medication regimen of oral meds and insulin. I knew until my pain levels were handled the blood sugar readings would continue to be high. I have had a difficult time getting my Endo to realize the impact the pain and inflammation have played in my diabetes, but post Rituxan my levels fell like a stone and my A1C level dropped to 9.8! I think I am making a believer out of him! In all fairness he is a great Endo and has confessed to me that he hasn’t ever had a patient with the mix of complicated diseases I have and we are breaking new territory together.

The Rheumatologist I saw did not want to re-diagnose me, thank God! I don’t know if it was the consultation order from an Oncologist that did it or that God knew I might go postal on another argumentative, arrogant Rheumatologist, but the appointment was interesting! He was reluctant to try Rituxan and recommended I at least try Arava for one month. I was not happy with his choice but felt compelled to work with him to get the Rituxan approval. The Arva was a horrible drug for me. Instead of reducing inflammation it worked to exacerbate my tenosynovitis to the point my mobility was greatly impaired and I was having frequent angina episodes. In fact, I had to have a nuclear cardiac stress test during this month. Upon return to the Rheumatologist, he did drop the Arava and gave the approval to my Oncologist to start Rituxan therapy.

The first infusion of Rituxan was over 6 hours. I was given oral Tylenol and IV piggyback bags of steroids and Benadryl prior to the infusion to help prevent any reaction. Because of the IV steroid I had to monitor my blood sugar hourly and give myself insulin as prescribed by the Endo. Rituxan is a monoclonal antibody that works against the protein CD20 found on the surface of immune system B-cells. According to medicinenet.com a B-cell is a type of white blood cell and, specifically, a type of lymphocyte. Many B-cells mature into what are called plasma cells that produce antibodies necessary to fight off infections.”  This targeting of B-cells is what makes Rituxan different from any other treatment I have tried.

Rituxan treatment is not without risk and this is why it was the end of the road treatment for me. Other than Symponi and Gold injections, I have tried all the other treatments for rheumatoid disease. My Oncologist rejected Remicade as an option because I had failed all the other TNF drugs. Patients have been known to die during or following a Rituxan infusion because of an allergic or adverse reaction. A monoclonal antibody is made from mice cells. The human body sees this as an invader and will try to reject it. This is why pre-medications are given to combat this reaction and the first infusion is given slowly over 6 or more hours to inhibit a reaction. The next infusion 14 days later was given in half the time at 3 hours since I did not have a reaction. The night after the second infusion I had some minor chills and ran a low grade fever that was relieved by ibuprofen.

I slept a lot through both infusions. The IV bag of Benadryl made me very drowsy. My Mother was with me throughout the infusions and drove me home from treatment for which I am very thankful. She helped me stay on top of my blood sugar monitoring because I was so drowsy.  I found that I was tired for a few days afterward, but I attribute some of the fatigue to the Benadryl as I have always been sensitive to this medication. I was feeling somewhat better when I received by second infusion but was feeling a vast improvement of symptomatology two weeks after my second infusion.

I saw my Rheumatologist last week and he was very pleased with my progress. The pain has been cleaved in half of what it was before. Fatigue remains. My liver enzymes did soar after the first infusion but my lab work last week showed they had normalized. I did get my flu shot in September from my primary care Internal Medicine MD but the Rheumatologist warned that I may not have any B-cells left to give immunity from the flu and warned that I need to take precautions against the flu this winter. As a diabetic, I cannot take steroids so I use prescription ibuprofen, Omega 3, and Vitamin E. This Rheumatologist recommended Turmeric 1000mg daily to my current regimen. My inflammation is better and the CRP and ESR are within normal limits on my lab report.

I have hope that this treatment is going to work. I was so afraid it wouldn’t and I would be stuck in the hellish nightmare of pain. I am doing better than I have in years and I am so thankful that my diabetes and cardiac issues are also falling into line with my improved health. Glory to God for answered prayers! Rituxan may be the end of the road for treatment options at this time, but it has put me on a new path to improved well being. Every doctor I have seen post infusion are ecstatic. People in my church say, “you look like you are feeling better”. I am better. Perhaps remission is just around the bend.

If you’d like to know more about Rituxan, I find drugs.com to be an excellent resource for laypersons about medications. Check out:  https://www.drugs.com/rituxan.html or Rituxan.com.

 

 

 

Benefits of Coloring for the Chronically Ill

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Coloring has been a favorite pastime for me so I couldn’t be more delighted when the adult coloring books with mandalas, florals, animals landed in stores this past Christmas. Prior to adult coloring becoming a fad, I was a closet coloring fiend! I have bunny and puppy children’s coloring books and crayons stashed! If anyone ever caught a coloring book in my magazine stack I’d just say it belonged to my cousin’s little girl! I didn’t want to be shamed for enjoying coloring like a child. I guess there were a lot of us secret coloring fans who came out of the closet at the same time given the explosion of books in the marketplace.

Coloring relaxes me, especially when I am coloring something that draws all my attention to detail. I now have four thick adult coloring books which I have proudly strewn through my house. I’ve traded crayons for colored pencils and markers.

Studies show that coloring something with detail like a mandala (round wheel with shapes and lines inside it) lowers anxiety levels.”Just like meditation, coloring also allows us to switch off our brains from other thoughts and focus only on the moment, helping to alleviate free-floating anxiety. It can be particularly effective for people who aren’t comfortable with more creatively expressive forms of art.”

As someone who battles chronic illness daily, I find that coloring can distract me from pain levels to a degree. Coloring requires concentration and an eye for details and mixing/matching colors. If my fingers are hurting, I’m mindful to only color for a short time and put it away instead of trying to finish a page. It make take me 3-4 sessions to finish a page and I’m usually happy with the results in having taken my time. I find it comforting to color from books with scripture from the Bible because while I’m coloring the design, the scripture is going round and round in my mind. That helps feed my soul.

I keep a coloring book and a tin of colored pencils next to the bed for those pain induced insomnia nights. Coloring helps still my mind, provides a distraction from the pain, and usually helps induce sleep. When I am a feeling a little blue, coloring lifts my spirits! I sometimes color in my quiet time with God to focus my prayers. Recently, my coloring has now drifted to Bible journaling with colored pencils and pens. This is also a growing trend in the Christian community.

Please don’t mistake coloring as art therapy. “According to the American Art Therapy Association, art therapy is a mental health profession in which the process of making and creating artwork is used to explore feelings, reconcile emotional conflicts, foster self-awareness, manage behavior and addictions, develop social skills, improve reality orientation, reduce anxiety and increase self-esteem.”* Although coloring can be beneficial mentally, art therapy involves a relationship with a therapist whereas coloring is an individual activity.

You can find adult coloring books now at any box retail store and I’ve even seen a few in Dollar General and Family Dollar stores. There is also a wide selection of adult coloring books available online from places such as Amazon. If you haven’t colored in a while, I’d encourage those of you who need to “get out of your head” to try your old childhood pastime of coloring. You might just be surprised at the benefits coloring can bring to your life.

*CNN – “Why Adult Coloring Books Are Good For You” (http://www.cnn.com/2016/01/06/health/adult-coloring-books-popularity-mental-health/index.html)