Epic Pharmacy Fail

I recently discovered that my local pharmacy had been giving me the pediatric dose of Enbrel for the past 6 months! Yup. You read that right. Since January I have been receiving half the amount of medicine that I was suppose to be taking. I only discovered this mistake because I recently switched insurances and was requesting new prescriptions for my new insurance plan. My rheumatologist called me to clarify that I was actually taking the 25 mg "dosing kit," which is very rarely offered anymore, instead Enbrel typically comes in pre-filled syringes or auto-injectors. She was completely shocked about this dosing error, as her prescriptions had all been correct. Therefore, somehow my pharmacy had been giving me the wrong dose, month after month as I refilled it.

Now don't get me wrong. I actually really like my pharmacy. In fact, I found it very hard to call them and complain about this error, but I needed to make sure it wouldn't happen again. The pharmacist was literally speechless and didn't know what to say to me. I have used my local town pharmacy my entire life and even after moving away, I still traveled back home to continue using this pharmacy. It is a small family business and they know my whole medial history which has helped decrease many stresses and hassles over the past 28 years. I have been willing to pay a little extra money, instead of using mail order, to know that my prescriptions are handled correctly, will be ready on time and there are no surprises. Unfortunately, my trust was recently shattered. 

I know how lucky I am that even on half the intended Enbrel dosage, I still have felt OK. I know it could have been a whole lot worse. I am optimistic that now that I am on the correct adult dosage, I should continue to feel even better. Moving forward, I will most certainly check all of my prescriptions more thoroughly! 

Rheumatoid Arthritis and Vaccines

I recently got a new job in a hospital setting and as a result all of my immunizations had to be checked to make sure I was not susceptible to any infectious diseases. As a child, I was vaccinated by my pediatrician with the Hep B series, MMR and all the other childhood vaccinations. I have always been vigilant about receiving my yearly flu shots and occasional pneumococcal vaccinations as well. As a person with an autoimmune disease, who is also on immunosuppressant medications (Enbrel),  I have always been on time with my vaccinations and very careful about washing my hands or my contact with people with infections.

So needless to say, I was surprised when I was found to be susceptible to Hepatitis B and Rubella. As I mentioned, whenever you work in hospitals, you need to demonstrate immunity to Hepatitis B in case you have contact with a patient who may carry it. In 2011, I worked in a long-term acute care setting and was found to be susceptible to Hepatitis B. After conversations with my rheumatologist, I received a Hep B booster (one shot) and never really throughout about it again. Until recently..

I was again found susceptible to Hepatitis B in January, only 4 years after my original booster. After more conversations, it was concluded that once again there is not a lot of research about people on immunosuppressant medications and their antibody response to vaccinations. It is thought that the immunosuppressant treatment (biologic medications, chemotherapy, etc.) may decrease their bodies ability to effectively make antibodies to protect themselves from infection from the diseases. Furthermore, even if their body is able to make the appropriate antibodies, the level of protective antibodies may decline quicker than their non-immunosuppressed peer, thus resulting in more frequent need for additional vaccination boosters. (Medscape, 2001)

Fortunately, Hepatitis B is not a live vaccine and only carries part of the disease thus weakening side effects or chance of infection, (vaccine types) and is therefore safe for people on immunosuppressant therapies. So I am once again completing the series of shots in hope to boost my immune response.

However, two weeks later, my test for Rubella (or German Measles) came back "Equivocal" or inconclusive. Meaning they were unable to determine if I had protection or not from this disease. Now I was starting to be worried. Why was my body losing all of it's immunity! After discussing with my rheumatologist again, we decided it may be time to see an infectious disease specialist for further advice. The MMR vaccine (which I had received as an infant) is a live vaccine, which mean it contains much more of the active virus than a inactivated vaccination. Live vaccines do not make healthy people sick or cause any diseases such as Autism (a post for another day!) However, people with weaker immune systems may demonstrate more symptoms or illnesses.

So, receiving the Rubella vaccine would mean not taking my Enbrel for up to a month! This was not something, I wanted to do unless absolutely necessary. At my next medical appointment, I asked to have my immunity to Rubella re-checked, since the initial test was not clear. None of my health professionals had mentioned this even as an option, but I wanted to make absolutely sure it was negative before pursuing more specialists. And it came back positive this time! Fortunately, this means I did not have to stop my Enbrel or see another specialist, for now...

I wanted to share this story because I'm sure some of you have had similar experiences! There definitely needs to be more research on vaccinations and their effect in people with autoimmune diseases. Especially now that some people are choosing to not vaccinate their children, thus exposing many people to potential infections, outbreaks and serious illnesses.

The Lack of Spontaneity

I have always been a planner and organizer. Crossing items out on a to do list is gratifying and rewarding. I live by my google calenders and have post-it notes everywhere. However, it's hard to tell how much of this is my personality and how much of this has been a product of my JRA. Keeping track of at least 6 different specialists, from different hospitals with different clinic days, requires a good organizational system. Remembering when to take pills each day and eye drops as frequently as every four hours, requires consistent and successful planning.

However, I feel like I have missed out on the ability to be spontaneous throughout my life. I had contact lenses at five years old due to my Uveitis and as a result any overnight school trips or friend slumber parties required more planning than my peers. My mother would often drive to my friends house, remove my contact lenses and then come back the next morning to put them in (being as inconspicuous as possible) so I could still experience those childhood memories. Even as I entered college and I was independent in all my healthcare needs, my life still lacked the spontaneity that my friends enjoyed. I could never "crash" on a friends couch  and walk home the next day (not that I ever wanted to!). If there was ever a chance I wouldn't be coming home that night, I would "plan" to be spontaneous and pack the smallest bag possible with back up contact lens solution, glasses and eye drops. I often carried a Marry Poppins type purse filled with re-wetting eye drops, purel, spare contact lenses, contact cases, contact solutions, advil, icy hot and medications.

Still to this day, I often wish I could just fall asleep on the couch and wake up the next morning but I have a nightly routine of 6 eye drops that need to be applied a few minutes apart. I call this nightly ritual "the process" and it has just become a part my normal routine. Even though the days of spontaneously crashing on friends couches are over, I still long for the ability to have a little more carefree impulsiveness in my life...

My Safety Net

I can not remember a time in my life where I have not taken a handful of pills every morning and every night. The type of pill, the amount of pills and the frequency I took them changed often, but I always took pills. I have never been one of those people who needed to set reminders to take their medicine, or needed those weekly dosing containers, because it was just part of my daily routine. However, recently I stopped the majority of my oral medications and am only using a subcutaneous injection, Enbrel, and occasional nutritional supplements (those don't count as pills in my mind!).

When I first made this change, I was cautiously optimistic and excited that my disease is under such well control that I was able to make this change in the first place. However, all day long, on that first morning without pills, I felt like I had forgotten something important to do. I also felt strangely vulnerable and exposed. For my entire life, taking medications every day has been my safety net, my reassurance that if my joints were sore today the medication would being working soon and help me feel better. Although most of the medications have unknown and scary side effects, I still feel like they are almost a part of me. They have helped my joints move, my swelling decrease and allow me to live life the way I would like. Without this safety net I feel like I am preparing to jump off a bridge without knowing if there is net below to catch me. However, this time the change is my choice and that makes living on "the edge" a little easier..