Tuesday, January 14, 2014

Is the Flare Finished?

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.  

I currently have my fingers double crossed that I'm on the other side of the flare.  I had to have a number of days of steroid infusions followed by a slow taper to get my overactive immune system under control.  As we all know, being on steroids have all sorts of unwanted side effects including lowering your overall immunity.  Not surprisingly, during this winter season where everyone seems to be sick, I came down with a super bad virus that included fever, cold, and stomach upset that left me flat on the couch for another week.  So here I am again, slowly rejoining the world after another autoimmune blip.  I'm hoping and praying that there aren't many of these interruptions in 2014!


  1. Very interesting. Thanks for writing this. I have been in a flare since the beginning of December and seems to be getting worse. I have FM. Haven't been diagnosed with Sjogren's but still keeping that one in mind.

  2. Another excellent post! Welcome to the world....hope your flare continues to wane!

  3. I have experienced similar issues after having my allergy shots. Usually the day of and the day after the shots. I guess it makes sense. Our immune systems are already out of whack on a normal basis. Throw some foreign matter into our bodies and our immune systems probably decide to throw a kegger! lol

    I hope you are back to "normal" fairly quickly!

  4. I have Sjogren's and FM. I only take over the counter meds. In 2009 I had a flu shot and experienced swollen joints, frozen neck, dizziness, etc,for almost a year. I haven't has a flu shot since 2009. I seem to have had a very high autoimmune response. My doctor accepts my refusal to take the shot but does not acknowledge that the flu shot triggered my problems. Thank you for reporting this reaction. All Sjogries who avoid medications should be aware of the possibility of a reaction similar to yours.

  5. Funny--i just asked my rheumatologist three days ago if people with autoimmune disease should avoid the flu shot. (He is a top-notch doc at the Hospital for Special Surgery in NYC.) He did acknowledge that they can have bad reactions but said that, in a cost-benefit analysis, the benefits outweight the possible costs.
    I should confess that, because of my Sjogren's, I refused to get the shot this year, and --being a stubborn, pig-headed woman--I still won't get it.

  6. Thank you so much for this timely post because I was considering getting a flu shot next week. I haven't talked to my doctor about it, but I also have specialists in autoimmune disease even though I am in good shape now. I really do want to get the shot, but I would rather avoid the flare you had if at all possible.

    Eleanor Briones @ US Health Works Milpitas

  7. Finally! I thought I was crazy. Every time I receive a vaccination it is followed by a flare (for me rheumatoid arthritis). I started pharmacy school in the fall and had to complete a series of immunizations to meet their requirements. Just as I would come out of a flare, I would get another immunization and a new flare. Needless to say, I did not survive pharmacy school. I knew the immunizations were the trigger but had a hard time convincing them. Thank you so much for posting!

  8. Thank you for sharing this information with all of us. I had the flu shot last week (I know a little late in season) and within 24 hours started experiencing neck stiffness, pain, joint pain everywhere, numbness in hands, muscle weakness, and more. I'm on day 5 and I feel like I will never get better. I haven't been diagnosed with an autoimmune disease but I've suspected I have one just like my sister who has lupus. I have an appointment with a rheumatologist next week and then I will update. Val

  9. So flash forward to a Covid times! I feel that with Early Sjogens snd other issues I don’t want to risk lowering already crazy immune system. My legs ache daily like an 8 I’m severely fatigued. Started Hydroxychloraquin 2 months ago..high Ferritin 358 not one doc has helped me. No classic dry symptoms except a little dry lips,??