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 Eye Ultrasound (and other strange medical tests)

This morning I had a follow-up eye doctors appointment. I have been seeing a retina specialist for about two years to follow a cyst in my right eye. Initially the discovery of this eye cyst was very unnerving because they were unsure of it's origin or pathology.  However, it seems that somehow the cyst is in the perfect place, between all the important eye structures and my glaucoma tube shunt implant. And as long as it remains there, happily not bothering anyone, no one seems overly concerned anymore. As a result, every 6 months I visit this specialist and have two eye tests done, photographs of the inner parts of my eye and an eye ultrasound. When I first heard I needed an ultrasound, I thought "wait, how does examining my stomach tell you anything about my eye?" There are indeed a ton of different types of ultrasounds and ways to use ultrasounds. Physical and occupational therapist often use ultrasounds to provide deep heat to joints, muscles and tissues. An eye ultrasound is not a painful test but it continues to be one of the strangest sensations I experience. I am by no means uncomfortable with eye drops or touching my eyes. I have worn contact lenses since 5 years old, used eye drops since before then and have had four eye surgeries. However, this test is still very strange! First, they use numbing eye drops to make your eyes more comfortable. Then they use an ultrasound stylus with ultrasound gel on it and rub it all over your eyeball, taking pictures in certain spots. It feels as awkward as it sounds. There is cool gel being rubbed onto and all over your eyeball, your vision is blurry and sometimes you enjoy the pleasant experience of cool ultrasound gel running down your cheek. Fortunately, the test is over quickly and you can move on to more pleasant tests..

My second least favorite medical test is the visual field eye exam. As a result of my glaucoma I need this test every 6 months to make sure that my visual field (the amount you can see in the periphery when your eye is focused on a point centrally) is stable. For this test you close one eye and place your head inside a giant circular bubble. These bubbles remind me of the chairs Will Smith sits in during
Men In Black. Then they flash small bright dots in various directions inside this bubble and you click a pen every time you see a dot of light. Testing each eye can take up to 5 minutes but it often feels a lot longer. I once made the horrible mistake of scheduling one of these tests the day after St. Patrick's Day while I was in college. I had gone out the night before and was not feeling myself the next morning (read: extremely hungover). This may have been the worst possible test to take hungover as every flashing light made me feel nauseous, my eyes were tired and dry and I am sure I missed seeing many lights that day. I will never make that mistake again.

Appointments before sunrise

I am not a morning person. I use to easily sleep till eleven as a child and college student. You would not want to talk to me during breakfast before high school and I still need my coffee before I can smile each morning. Therefore having to wake up at 5.30 am this morning to make it to my 6.40 MRI appointment and 7.45 eye appointment was not enjoyable. However, scheduling these appointments so early was my idea, in order to make two appointments back to back and still be at work before my first patient arrived. So I rolled out of bed before the sun rose and started the expected 30-45 minute ride to the hospitals in my city. However, some of you may have heard of the recent weather we have been having...

On the right is a picture of the current streets in my city and the left is my actual backyard. Needless to say traffic was not good and I was 20 minutes late. Luckily, they saw me right away and I made it to the MRI successfully (I'm investigating SI joint pain) and then my eye appointment on time (read about my JRA background and eye disease here). As I was negotiating downtown traffic in the snow, parking in one garage, walking in between two different hospitals, knowing exactly where I needed to go, I thought that my JRA has indeed taught me some valuable skills. I know many peers who will not drive into "the city" because it overwhelms them, or who would have taken the whole day off for these appointments. I feel fortunate that I have never been nervous to drive in the city (as soon as I got my license I drove to my own appointments) and that I can negotiate hospitals and appointments before I have even finished my morning coffee. So I was off to work for my 10 hour day. Today definitely felt like two days in one, but tomorrow is another day and more importantly a day I can sleep till 11!

Climbing Mt. Everest

Yesterday I watched a TV show on Iraqi war amputees who were climbing the 7 highest mountain peaks to help them rehab emotionally and physically. Every step was a struggle but they eventually all made it. I often feel like I am climbing Mt. Everest and especially today every step felt like a struggle. 

I've been lucky to have some amazing doctors who treat me as a person and not a condition. Today though as I met with my glaucoma* doctor, I felt like he only saw my eye. As I began to inquire about my goals for a family in the future and the medication management required, his demeanor became grim. "Well...some people do great with improved glaucoma, and some people have a horrible, out of control eye disease" Fabulous, thanks for the boost of confidence. As a clinician myself, I often get asked questions about predicting the future. "Will my child grow out of Autism?" "Is he ever going to be able to pay attention in school?" And like my doctor, I can't predict the future for them and he can't predict my disease progression. However, how a clinician presents negative, uncertain or scary news makes such a huge difference in the patient's outlook and perhaps even their disease progression. One giant fall down the mountain...

Luckily, I do have an amazing ophthalmologist who agreed to see me the same day to check on my eye disease. She eased my fears and said my eyes were clear. She could sense my anxiety and stress about planning for a family in the future. We discussed how 50 percent of medicine is science and knowledge and the other 50 percent is relating to patients, appreciating their goals and easing their concerns. This is why this doctor rocks! I left my second appointment of the day in a much better place. Still terrified about what the future may hold, but optimistic. Climbing back up that mountain towards the peak...

And to further ease my stressful day, my amazing husband food shopped and cooked dinner so I could have a stress relieving bath. I do think with the support of my husband and family, I will be able to make it up that mountain, one step at a time, overcoming every storm and set-back in the way.

*Background Eye Information: My JRA caused Uveitis (inflammation of the uvea in the eye). It has been a constant struggle to control and the most effective treatment personally has been Prednisone eye drops, which unfortunately overtime can cause increased eye pressure leading to glaucoma. As a result I have had surgical interventions to control my glaucoma and am followed closely.