Every year there are discussions on the Sjogren's email lists (www.dry.org) about whether we should get flu shots or not. There are also discussions on the pneumonia and shingles vaccines, and about live vs. 'dead' vaccines. The following are my thoughts and experiences, not to be confused for medical advice. Consult your own doctor regarding your own needs.
A couple of weeks ago, I felt a little achy in every muscle for a couple of days. Keep in mind that this 'little achy' is on top of my usual aches and pains, which adds up to a rather 'beat up' feeling. I had gotten my flu shot. Working in a hospital, I get such shots free, which helps. I have never before had a systemic reaction to the flu shot, usually I get varying degrees of stiffness, pain and swelling just in the arm where I got the shot.
The pneumonia shot a few years ago did give me a systemic reaction. I had fever, chills, aches, which lasted several days. This was much better than getting a full blown case of pneumonia. Still, if I need another in the future, I will discuss this reaction with the doctor to find out what they recommend.
Some people would rather take their chances of getting sick than subject themselves to a shot, and the financial cost is a factor for some people as well. Why is this subject such a big deal on the Sjogren's email lists? Sjogren's Syndrome (Or as it is being called more and more these days, Sjogren's Disease), is an autoimmune syndrome. Our own immune systems misguidedly attack our moisture producing glands. Some people misinterpret this as our immune systems being overactive, rather than misguided. They may be afraid that their immune system will over react to the flu shot, and make them sick, or trigger a flare. Everyone is different, and how each of our bodies react to the vaccine will vary.
For some people with Sjogren's Syndrome, there is another factor that comes into play in this decision. Many people with Sjogren's are on Plaquenil or Methotrexate, or other DMARDs. That means that they are disease modifying anti-rheumatic drugs. These medications suppress the immune system, and by doing so, decrease symptoms. People with suppressed immune systems need to be more careful in exposing themselves to potential infectious substances. My own understanding is that most vaccines, made from dead virus cells, are fine for them, but vaccines made from live virus cells should be avoided. That means the flu shot is okay, but the nasal spray flu vaccine (made from live cells) is not. (this is my understanding, I could be wrong).Many people get little or no reaction to vaccines. If they do get a reaction, it is usually mild, and lasts 2-3 days, which is much better than the week or two that the flu lasts, not including any residual symptoms, secondary infections, etc. Besides that, the flu is more than just achy muscles. It is fever, headaches, coughing, fatigue, etc. My thought is to get it once, see how you react, and base future vaccination decisions on that response. (I am still not your doctor, this is only my personal opinion.) If you are trying to decide whether or not to get vaccinated, your doctor would be a good person to ask. Whatever you decide, take care of yourself, and stay warm this winter.