You hear a lot about lupus mouth sores and nose sores, but what about lupus and cold sores? For many years, I would get a cold sore in the exact same place on my top lip. I never really paid attention to when I would get these until I was diagnosed with lupus. When I am experiencing a bad flare, these lupus cold sores always make a nice and dramatic entrance on my face.
So there was definitely no surprise when I had a cold sore pop up with this latest lupus flare I have been battling since Christmas week. I was hoping the high dose steroid taper I received would help knock me out of this flare, but it seems my lupus has other plans. According to Kaleidoscope Fighting Lupus, taking steroids can actually cause side effects like cold sores and yeast infections. I guess my immune system is just all out of wack at this point. Having a cold sore during a lupus flare just makes things that much worse. They are incredibly painful and are not very pretty, especially for the fact they are on your face.
How common are cold sores during a lupus flare?
Cold sores are actually caused from the Herpes Simplex Virus. According to Healthline, many people are infected with the virus as children. This would make sense for me personally since I have had periods of them throughout my life. People with compromised immune systems, like lupus, can cause the virus to reactivate at certain times when the immune system is going haywire or into overdrive. If you are a lupus patient, you probably know that is exactly what happens to our immune systems during a flare.
Immunocompromised patients carry a high risk for herpes simplex virus and varicella zoster virus (VZV) infections. For lupus patients like me, the use of prednisone and mycophenolate mofetil, also known as CellCept, have been known to have side effects such as cold sores.
A study of Herpetic Viruses in Lupus determined that out of 2,013 hospitalized SLE patients in the study; there were 59 cases of varicella zoster and 129 cases of herpes simplex. So I think I am safe to say that I am not alone in dealing with painful cold sores while also battling lupus. Whether these cold sores arise due to a crazy immune system or as a side-effect of medicines used to control lupus, it seems that we may be a little more apt to get them compared to others.
I can usually tell when a cold sore is beginning to form considering how many times I have had to deal with them. I usually have a tingling sensation before it ever appears. If you have any nerve issues, I can kind of feel similarities although it’s a twitching almost. Usually a few days afterwards, the first bubble appears.
This particular cold sore is the first one I have had in a while. I mistakenly took it for a pimple and tried to pop it. WORST DECISION…ever lol. Within an hour, I noticed how it had literally quadrupled in size. Upon further inspection, I was able to see the many bubbles and instantly knew what it was. The damage was done. It has finally started to scab over and dry up, but I seriously hate the whole process and fact that cold sores are even a thing.
Thankfully mine usually appear in the same spot every time [edit: 3-8-20 I take back what I said…I now have a new one on face below my nose and a new one popping up on my lip in a place I have never had either].
Have you ever experienced a cold sore during a lupus flare? If you have, know that you are not alone! If you haven’t, consider yourself lucky….they are painful!