Alright, I am slowly emerging from my flare. Thankfully! I've been out of touch here for too long. It has been a rough few weeks and as those of you know with autoimmune disease, flares and their duration are unpredictable.
The first interesting thing about this flare is that it appears to have been initially triggered by the flu shot. Yes, the flu shot. Now, I know this might sound controversial, but bare with me, this is not my analysis but that of two of my physicians who specifically treat patients with autoimmune disease.
I got the flu shot and 48 hours later my autoimmune symptoms started acting up and then kept getting worse. Within the next couple weeks, I knew I was in really trouble. I went from being in a position where I could largely manage my Sjögren's to being in excruciating neurological pain. I had the good fortune of several relatively healthy months, so that I had almost forgot how severe and debilitating constant trigeminal nerve pain can be. Well, that changed fast. Pain medication wouldn't even touch it. My eyes became so dry and painful that I had to be put on steroid eye drops. I stopped being able to read or use a computer all together and went back into survival mode.
Now, being the stubborn Gal that I am, I thought to myself at the time, I can manage this flare myself. I won't contact my rheumatologist, there isn't much anyone can do for me. But when the pain started to reach an 8 everyday and I couldn't leave my home, I changed my mind. Well to be honest, my husband had to partially convince me that it was time to seek medical help.
I was hesitant to even mention the timing of the flu shot with my doctor. I expected my rheumatologist to think that I was nuts since I am so used to doctors touting the important benefits of the shot--particularly for someone who has so many health issues. But I was surprised. He told me that vaccinations do have the potential to cause activation of autoimmune flares. He said this doesn't mean that you shouldn't get vaccines, or even avoid the flu shot, but there are risks. (Note: This is in part why I have so much respect for my rheumatologist, he understands that there can be exceptions to the general medical wisdom.)
Then I talked to my eye doctor, who specializes in autoimmune disease. He also had a patient like me who went into a serious flare after getting the shot. At this point, I was at least sure I was not the only patient who had this happen. It was helpful to know, but also convinced me to write this post in case others have had a similar issues--however unusual it might be.
I want to be clear I'm not making any recommendation or generalization for other Sjöggies or autoimmune patients. As I've written in the past, I do tend to experience what are often considered the "rare" or "unlikely" side effects from medications and procedures.