Author Archives: Mischelle Jackson

About Mischelle Jackson

I am a middle aged, single lady living with Rheumatoid Arthritis and other chronic illness which have led me into early retirement from a nursing career. I have a fur-baby, Jaycee, a Chihuahua, who makes me laugh and helps me get out of myself when I'm having a bad day. I crochet for relaxation when the RA allows. My faith sustains me.

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.

Managing Medications Part 2: Cost/Assistance


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 –
  • PAN Foundation –
  • Caring Voice –
  • Patient Advocate –

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

  • Enbrel  –
  • Humira –
  • Cimzia –
  • Xeljanz –
  • Orencia –
  • Remicade –
  • Actemera –
  • Rituxan –

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 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


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


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 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 to be an excellent resource for laypersons about medications. Check out: or




Benefits of Coloring for the Chronically Ill


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” (



Part D Plan Appeals


If you have ever received a denial letter from your Medicare Part D plan for coverage of a medication you have been on for a good while, please know that you have options. You do not have to be held at the mercy of the Part D plan drug company if you cannot take an alternative medication on their formulary. This is my story…

During the last two months I have been dealing with the appeal process to get approval for my long-acting pain medication which my Medicare Part D Plan dropped from the formulary in January 2016. I used this plan last year and it covered all my medications except one. Considering the number of drugs I take I felt this coverage was very good. Because I was pleased with the coverage, I did not seek another Part D plan during the window Medicare patients can switch plans during Nov/Dec 2015 window. I was not notified by the Part D plan that they had dropped me from the premium plan to a savings plan which is why several of my once covered drugs were no longer covered. They stated they sent all their clients a letter but I did not get one… my word against theirs. Had I known they were making changes I did not authorize I would have compared plans during the open window when Medicare patients can change Part D plans. I did call Medicare to complain about the change of plan without my authorization and was told by the Medicare official that the Part D plan insurance company can change your plan at anytime in the year without your authorization, but they must notify you by letter.  This is a rather unfair practice in my opinion. If a drug company changes your plan in the year, you should then have an equal opportunity to seek a competitive plan!

I have been using the Butrans Transdermal pain patch for several years now for round the clock pain relief. It is in a classification of drugs that do not require a 30 day written prescription and can still be e-faxed to the pharmacy. This patch is worn 7 days at a time. When I received the letter from the Part D plan insurance company that they filled a one time 30 day supply of the patch but denied further refills because the drug was dropped off the formulary, my heart sank. You see, this drug made a huge difference in my life. My pain had become so severe that I was unable to sleep more than 2 hours a night and I was in bed an average of 3 days a week due to severe pain. Once my pain levels were brought under control through the use of this pain patch I got my life back! I no longer wake up unable to move because joints are locked. Although, I still have pain it is a tolerable 3-4 range most mornings on waking vs. 9-10 range it once was on the 0-10 pain scale. That is a vast improvement! Losing this patch I’ve been on for the last 3 years would have been devastating to me.

I started the appeal process fairly confident that my Part D plan insurance company would come to see reason and allow me to stay on this drug and cover it. I was surprised when the denial letter came in the mail with recommendations for medications covered on their formulary to which I am allergic or were unreasonable because the strength was too much (ten times the strength of morphine). I called the company and asked why I had been denied. I was told that I needed to contact my doctors office and let them deal with the appeal. This began a two month process in which multiple appeals were denied. My physician’s office had filed 5 first level appeals and they were all denied! I had called the insurance company 5-6 times myself only to be transferred to the incorrect party multiple times, to be given a case number that was non-existent when you called back to follow up, or to find that your appeal was denied because the physician’s office wasn’t open on a Sunday afternoon to meet the filing deadline on paperwork sent to them after hours the Friday before!

I was able to get an emergency refill of the Butrans patch after much haggling with the Part D plan representatives and then my appeal was denied again. When I called to ask the next step, I was told I needed to file a secondary level appeal but I was not told how to file this appeal. When I  asked how to file a secondary appeal I was given the run around time and time again. The insurance nurse representative at my doctors office was ready to rip her hair our because she had complied in filing every form they sent her. This nurse at my doctors office told me she had never dealt with a company that had denied appeals over and over when it was obvious the formulary choices they recommended were not appropriate. Finally I found through reading all the literature I’d been sent from Medicare, that a secondary level appeal is a independent appeal from a appeal company that works for Medicare, not the Part D plan insurance drug company! The Part D plan representatives could have given me this information but they chose to withhold it because they did not want to pay for this pain medication outside their approved formulary. After a one week period of reviewing my secondary appeal which just consisted of a letter containing my name, medicare number, and the reason for the appeal, this independent agency agreed the Butrans patch should be dispensed and the Part D plan must comply in allowing the medication to be dispensed through their plan!

So, you see, we have rights but you need to be informed. Read your Medicare handbook and don’t be afraid to call Medicare and ask questions. Do be wary when dealing with the Part D drug plan because they may not have your best interest at heart as they are a for-profit business. I can’t imagine what would have happened if I’d thrown up my hands and given up. I don’t want to think about those dark days of sleepless nights and pain so off the charts I wanted to die. We have rights.



Rheumatoid Disease Awareness Day


February 2nd is Rheumatoid Disease Awareness Day. The RPF: Rheumatoid Patient Foundation, supports this day of awareness for patients, the public, and healthcare providers. This organization was founded by patients for patients.

ccf1445a6effb0de4e0ac174beb14c4bYou can read about the foundation at this link: and also check out their educational materials. This site provides a lot of good, sound information for the newly diagnosed and shares progress being made in treatment for those who have been living with the disease for a while. You may choose to join the Foundation, but it is not necessary to access their educational materials. I would encourage you to bookmark their internet page for your own reference.

How do you feel about bringing awareness to Rheumatoid Arthritis? I will confess over time, my thoughts have changed about the matter. I went through my stage of research: having to read everything about the disease to educate myself. Then I went through the woe is me stage as I struggled to cope. I became angry because no one knew what the disease was about and did not believe my level of suffering. The public compared my hellish suffering to osteoarthritis. I thought if one more person compares a disease that has leveled my life to rubble to their pinky “killing” them I might just be fitted for a orange jumpsuit with a life sentence. Funny though, living with rheumatoid disease is a life sentence in it’s own right minus the orange jumpsuit. One is imprisoned by their own body. The jailer is the immune system gone haywire. The disease took me down kicking and screaming. One day … over time … and with God’s help I realized I had to let it go. I felt like I was at the end of my coping. I was growing bitter. It wasn’t serving any purpose to focus on the injustice of it all except to keep me ripe for a flare.

Today I can look at awareness for rheumatoid arthritis as just that: awareness. You may in the lifetime you have this disease bring some people to a level of awareness but no one will ever fully get what your situation is like except for another patient with the same disorder. Even then, you may share the same disease, but your symptomology won’t be exactly the same. You will have a shared understanding of what it means to suffer… as they say “misery loves company”.  Still no one knows what it is like for you except for you and your maker.  Finally I realized there are two groups of rheumatoid disease patients: those surviving it with hope or those surviving it with despair. I made the choice to survive in hope.

The awareness I would like to leave with you as this day of rheumatoid disease awareness approaches is that you never have to be alone in despair with this disease again. When no one else understands, Christ does. When your doctor can’t help you, Christ can. When you don’t think you can take another step forward, Christ will carry you. He is there waiting for you to accept Him. No medication, physician, spouse, family can ever provide what He gives freely: salvation.  It is only through my personal relationship with Christ that I am surviving chronic pain and illness with hope. I know this world is not my home. I have hope for an eternal future in heaven with Christ where there will be no more tears, no more pain, no more suffering. I refuse to live my life defeated. Instead I am victorious in Christ because this disease won’t hold me in a grave.  If you don’t know Christ  then I ask you to reach out to Him. My healing may not happen in this world, but it will happen in Heaven and that is my awareness as I enter my 7th year of enlightenment. John 3:16.

Meds Take Role In Faking Wellness


As I filled up two extra large medication planners this morning, one for morning and one for night to hold the 20 routine medications I take daily, I was cranky. I don’t like taking them. Some are expensive. Many of them stick in my throat due dryness associated with Sjogren’s Syndrome. Some of them hurt my stomach. Some of them make me feel dizzy and nauseated. Sometimes they don’t work!  I think to myself, “I’m not going to take them anymore!” Then the nurse rises up in me and says, “You will take your medication as ordered. You know better!” and the patient side of me who wants to throw the pills in the trash and run caves in to my more sensible nurse side.

Have you ever felt like stopping medication as a chronically ill person dependent upon your own personal pharmacy? I think you probably have. It’s normal. We don’t want to admit we have to rely on our medication regimens to get barely get by in life. Yet, throw a rebel fit and stop taking them for a day or two and suffer the consequences ten fold, right? Those 20 routine pills control a whole slew of chronic illnesses. Without these meds I quickly regress into a sloth that moans in pain without being poked, unable to get of bed.

I told a lady at church yesterday that I am a master at faking being well. I felt comfortable confiding that because she spoke the same language because she is finally coming into a autoimmune diagnosis of her own. The look in her eyes echoed mine. As I thought about that statement, it rang with resounding truth. How many of us are masters at faking being well? I suspect a large number of us are excellent actors!

I think we can attribute our academy award winning performances to our medication regimens. My medication does not control my symptoms as well as I would like, but for a few hours in the day I can fake being well to fit in socially. People like us, with autoimmune disease, understand the unwritten motto of the disease: You play, you pay (spoon theory).  The cost of faking being well is time spent resting. Going to morning and evening church services on Sunday wipes me out. I will spend all day Monday loafing between the bed and recliner too fatigued to do anything else. Throw a flare in there because I tipped the balance of play/pay (used too many spoons) and it’s ground zero. Can you relate?

In addition to the routine meds are the weekly and bi-weekly injections to slow the progression of rheumatoid arthritis, insulin injections, pain meds, muscle relaxers, ointments, balms, creams, gels, along with heating pads, hot packs, and cold packs. My bedside table and chairside tables are littered with prescriptions of all sorts. I have enough arthritic topicals to treat nursing home population twice! Try to take them away and I’ll tear your arm off! These medications promote my acting ability.

My name is Mischelle, and I am a faker at being well. Are you too?