Vaccinations are, at least in the opinion of most doctors, an important part of life and incredibly important in the maintenance of health. In recent years, vaccines have come under fire from parents and activists, suggesting that vaccines given during infancy and childhood may be responsible for increasing rates of autism. Given these opposing views, the decision to be vaccinated is a personal choice. And it can be an even more important consideration in the lives of chronically ill people.
Back in 2009, my rheumatologist suggested that I get a vaccination against pneumonia. This vaccine is normally given only to older adults, those 65 years and older, but is also recommended by the Centers for Disease Control and Prevention for those who have compromised immune systems due to illness or medication. Given the stories I heard on the news about people with chronic illnesses dying from pneumonia, I complied with my rheumatologist's orders.
The vaccine is only contraindicated in people who are allergic to some component of the vaccine, are acutely ill at the time the shot is given, and pregnant women. Otherwise, the vaccine is encouraged in people with chronic illnesses and compromised immune systems, who are more likely to get the disease, and more likely to die, if they do get pneumonia.
So to me, getting this vaccine seemed like a prudent thing to do as an obedient patient. I had to get the vaccine at the student health clinic. I went on a Friday in October. I noticed when the nurse went to give me the shot, that she was doing it in an odd spot, so I questioned her about this. She said that this is the way this particular vaccine is given. I had made my piece and didn't question any more.
I spent the rest of Friday not feeling very well, and woke up Saturday morning with a quarter-sized welt on my arm. My arm felt hot and hurt. I thought this was weird, but sort of put it out of my mind. On Sunday, the welt had increased to the size of a fist, and my entire body was in pain. I was fairly sure I had a fever. So I called the student health clinic, and was told by the doctor on call very dismissively that what I was dealing with was normal; and that I should wait and come in if things hadn't improved by Monday.
This doctor also questioned whether I got a flu shot or pneumonia shot. I told him a pneumonia shot. He asked why it had been recommended that I get the vaccine. I explained that I have lupus and rheumatoid arthritis. He clearly didn't bother to read my chart.
At the time, I was on Cellcept, an anti-rejection drug for organ transplant patients commonly used to treat lupus, which has severe immuno-suppressive effects.
Talking online to a chronic illness Internet friend, she suggested that I call the on-call rheumatologist at the hospital where my rheumatologist is. I did this, and was told to immediately get myself to the emergency room. I assumed that this would be a quick trip, and I would be home a few hours later. I even called my parents (and left them a message) - emotional that I was going to the ER - but told them to sit tight, and not to worry.
No such luck. Over Sunday night, things did not improve, and in fact, looked like they were getting worse. The ER had done what it could do. I was admitted to the hospital. Over the course of the next few days, I was given round after round of IV antibiotics, and to everyone's relief, things began to get better. But the pain was horrific. It felt like someone had put a vice grip around my arm.
Ultimately, I was diagnosed with a severe case of Cellulitis - an infection of the soft tissue - in this case, in my left arm. The next worst thing to this is - Necrotizing Fasciitis - flesh eating disease. Thankfully it wasn't that.
There are many layers to this story. That was my first hospital stay after I had been diagnosed with lupus and rheumatoid arthritis, all in the name of being a dutiful patient. It made me realize that my illnesses are very serious.
The hospital wouldn't directly say that the vaccine had been given incorrectly. I have a feeling they didn't want to be the ones to suggest negligence on the part of the student health clinic. But the doctors that saw me told me that I got lucky. They said they had never seen a vaccine reaction as bad as mine before, and keep in mind that this is a huge university research hospital. Aside from all of the rounds of IV medications in the hospital, I was put on a 10-day dose of oral antibiotics, and taken off of Cellcept for that period of time.
No one told me at the time, but repeat Cellulitis infections are common, and tend to occur in the lymph nodes. This happened to me in March 2010, four months after the original infection. I noticed that I had a lump in my armpit. It was painful and sort of reminded me of a shaving bump. But as the days went by, I ended up with more and more lumps. It occurred to me that it felt very similar to the way the Cellulitis had felt, different location, but same arm. So, you guessed it. I was the lucky recipient of repeat Cellulitis. By this point, I was off of Cellcept - because I noticed that after being off of it during the first Cellulitis infection, I didn't feel much different without it - I was now on Methotrexate. So I was taken off of that temporarily, and given a two-week dose of medication to treat the Cellulitis. Again with the medication, but at least no inpatient hospital stay.
The lingering fear is that because there is some suspicion that the vaccine was not administered correctly, it isn't fully known whether or not I was able to receive immunity to pneumonia. Also, it is suggested that this vaccine be given again after five years. I can tell you with a high degree of certainty that there is a very small likelihood that I would get this vaccine in the future.
So, despite what our doctors tell us, and despite our best intentions as patients, we are not immune to vaccine reactions and complications. While neither my doctors nor I fully understand exactly what happened to me after I received the Pneumovax, I can't imagine that something similar would have happened if I wasn't chronically ill. And if I wasn't chronically ill, I wouldn't have gotten the vaccine in the first place. So it's a chicken and egg thing. I don't think my rheumatologist was incorrect in prescribing the vaccine for me. But I do know that whether the reaction was allergic or from some other type of infection or complication, it was certainly made worse because I am an immune-suppressed patient.
I urge you to educate yourself about the pros and cons of vaccination. I also urge you to follow your intuition, ask questions and seek care, when you have doubts or concerns. Recall that I had questioned the nurse administering the vaccine. And thankfully, I didn't stop with the doctor at the student health center. Had I followed his advice, it's highly likely that I would have lost my arm, and worse, possibly my life. Student health would never take responsibility for the incident, even though I think they are fully culpable. They even put the blame on me, suggesting that I had "no business" getting the vaccine in the first place.
Many vaccines say that you should not get them if you have an allergy to a vaccine component, or if you have Guillian Barre Syndrome, an autoimmune disease in which the body attacks the nervous system. Generally, though, as long as a vaccine is not live, it is not contraindicated in people who are chronically ill.
In the post-marketing experience of Pneumovax (see the January 2011 edition of the vaccine insert), injection site cellulitis-like reactions were reported rarely; between 1989 and 2002, when approximately 43 million doses were distributed, the annual reporting rate was <2/100,000 doses. These cellulitis-like reactions occurred with initial and repeat vaccination at a median onset time of two days after vaccine administration. I used to joke that, given the rarity of being officially diagnosed with both lupus and rheumatoid arthritis, my body loves the 1 percent mark. But in this case, my body found favor in the 0.0002 percent mark.
The vaccine insert also indicates that the vaccine should be administered "subcutaneously or intramuscularly (preferably in the deltoid muscle or lateral mid-thigh)" and warns "Do not inject intravenously or intradermally". As far as I can tell, the vaccine was given above the elbow, on the outside of the arm, far below the deltoid muscle, and may even have been administered intradermally (within or between the layers of skin).
When I contacted the student health center about my experiences, as I said above, they were very quick to place the blame on me. They mentioned that they went back to read the vaccine insert - (shouldn't they have done this prior to giving ANYONE the vaccine?) - and felt that what happened to me was a freak event that no one could have predicted. I wasn't looking for prediction, and I have since read the vaccine insert myself, as it is available online (see previous paragraph); I was looking for some acceptance of responsibility and an apology. Additionally, the health center refused to give me the Pneumovax and the flu shot on the same day. However, according to the vaccine insert, The Advisory Committee on Immunization Practices (ACIP) states that the pneumococcal vaccine may be administered at the same time as the influenza vaccine (by separate injection in the other arm) without an increase in side effects or decreased antibody response to either vaccine. So which side is giving the most misinformation? Enough said (student health center).
There is an incredibly interesting article, entitled, "Vaccines and Autoimmune Diseases otf the Adult", which explores the complicated relationship between autoimmune diseases causing vaccine reactions, and autoimmune diseases themselves being caused by vaccines. I urge you to read it.
While I have gotten the flu shot and H1N1 vaccines since I have been diagnosed with lupus and rheumatoid arthritis, I do it with baited breath given my experience with the Pneumovax. I'm not anti-vaccine, but I was concerned about getting a tetanus shot when I was due for one a few months ago. Other than what was deemed a "psychological" reaction to the first dose of the HPV vaccine, I have never had any other type of reaction to any other vaccines since I became chronically ill.
Keep in mind that I can't really speak to vaccines and reactions with other rheumatoid arthritis treatments, such as biologic medications, which I haven't been on.
As the new school year approaches, and parents and children flock to doctors' office for annual check-ups, be aware of the vaccines being offered and the potential side effects that can occur, even if only very rarely.
As with anything health related, talk to your healthcare provider to find out what's right for you.
And if you have a negative experience with any vaccination, you should contact the Vaccine Adverse Event Reporting System.
Leslie Rott is the author of the blog Getting Closer to Myself and the organizer of the patient-centered blog carnival Patients for a Moment.