When Symptoms Progress to Damage
Last updated: March 2023
Approximately 1 year ago, I had to pause the first immunosuppressant I’ve ever taken for lupus: azathioprine. After 3 years on that medication, a specialist told me it was doing little good and a lot of harm.
It must have been doing some good, however, because I started to have inflammation and damage to my eyes within a month of stopping it. I ended up continuing on a half-dose throughout the remainder of my pregnancy before stopping it permanently. Today, I am still dealing with liver issues, which were the original reason I needed to stop the medication.
Where, oh where will the damage occur?
When I was first diagnosed with lupus, I was alarmed to read it can attack just about anything in your body. There are spots that it favors, like the kidneys and heart, but it can affect your blood vessels, brain, lungs, or even rarer spots like your spinal cord.
I was distressed thinking about how my doctors could possibly monitor so many places. I felt consumed with thoughts about how lupus could be damaging an area of my body that wouldn’t show up on routine labs. How would we know what lupus was up to?
Worrying about the rarer complications has taken a backseat as I’ve turned my attention to active symptoms that are causing real-time damage.
When my lupus symptoms began to attack
When I stopped my immunosuppressant last year, I immediately began to have more joint pain and dryness in my eyes and mouth. Within a month I experienced a corneal melt in my right eye, meaning my immune system was attacking and destroying part of the corneal tissue. We were able to treat it aggressively with steroid and immunosuppressant eye drops, but I ended up with a scar on my cornea and the issue is not in total remission.
However, I haven't been able to treat the mouth dryness as effectively. I did start a biologic, Cimzia, that seemed to help. I also use artificial saliva products and have made lifestyle changes like sipping water frequently and avoiding certain medications.
My dry mouth has been annoying, even embarrassing at times, but I didn't realize it was bad enough to start causing damage so soon. Last week, my dentist found gum recession and tooth decay during routine cleaning. My imaging is being sent out to 2 different specialists and the phrase "gum graft" was introduced into my personal vocabulary.
I want an undamaged body
Many people with lupus have to deal with things that they never imagined they’d have to cope with. Some people lose their hair, others lose their kidney function, and some people do lose their teeth or vision. At first, it's unimaginable, but then suddenly you have to figure out how to live with your reality.
All sorts of autoimmune diseases can cause damage to your teeth and eyes. Some of my issues may be due to the Sjögren's syndrome overlap I have within my lupus. Nonetheless, I was not expecting this to start affecting me so quickly – I only found out I had early Sjögren's antibodies about 8 months ago.
I have so much longer to live with these conditions. And I want to live a full life – I greatly want one where I get to keep my teeth. But, no matter how hard we work to keep our diseases under control, the damage is sometimes unstoppable.
Has lupus caused damage to your body?
How are you most likely to respond when someone offers you unsolicited advice about your lupus?