"dream great dreams and find the courage to live them"

-erwin mcmanus

Tuesday, August 4, 2015

How My (Former) Dermatologist caused me to develop Lupus.

I was having a hard time getting out of bed in the morning because my joints hurt so badly. I was constantly tired and couldn't roll over in bed without sharp pain in my hips.  It became hard to move, though I continued to live my life normally.

Here's the story:

I thought I had somehow dodged the single-most terrible self-esteem killer of the adolescent world.

When I graduated high school and college without any major problems with acne, I thought I was in the clear.  Little did I know that the struggle would start ten years late!

Working in the Kansas City area, my position was incredibly high-stress (this feels like an understatement). The degree of stress brought on all kinds of new problems with acne, anxiety, and depression too. I moved to Saint Louis thinking that the change of scenery and drastic decrease of stress levels would be a cure-all.

It wasn't.

I started seeing a dermatologist in the area who prescribed me a low-dose antibiotic.  It didn't work.  Two months later, he increased the dosage.  It didn't work.  Two months later, I ask if a different medication might work differently/better for me, so he prescribed a different antibiotic, at a higher dosage.  It worked a little bit, but not much.  Two months later, he increased the dosage.  And increased again.  And again. And again.  The same increase, every two months, for two years.

Never having been educated on the effects of antibiotics, I didn't know any better.

After getting married last summer, I changed health insurance companies, which meant that I had to switch dermatologists.  My new dermatologist is younger, and educated in a different school of thought than my previous near-retirement dermatologist. When she saw the dosages of antibiotics that I had been on and for how long, she immediately told me we start weaning off, because of how bad it can be for your system.

As we weaned, she continued to ask me if I had been having any joint pain.  At first, I said yes, but explained that I had been in a car accident in 2006 that caused ongoing knee issues. Several months later, I was having a hard time getting out of bed in the morning because my joints hurt so badly. I was constantly tired and couldn't roll over in bed without sharp pain in my hips.  It became hard to move, though I continued to live my life normally.

When I told my new dermatologist, she immediately ordered bloodwork and explained that the prolonged use of antibiotics can cause drug-induced lupus. (Here is some info on Lupus from Mayo Clinic)

WHAT?!

I was shocked.  And sad.
My bloodwork came back positive for ANA (antinuclear antibodies), which indicated that my immune system had launched a misdirected attack on my own tissue.

In July, three months later, I had bloodwork done a second time to see if the levels of ANA were back to normal.  With drug-induced lupus, the lupus should go away after being off of antibiotics for a period of time.  The symptoms should lessen.

Mine didn't.  And still haven't.

They anticipated the levels of antinuclear antibodies in my bloodstream would dramatically lessen over the three months after the original blood test.  Two weeks ago, I learned that my levels of ANA had only dropped a tiny bit.  I also learned that drug-induced lupus can persist and become regular run-of-the-mill lupus.

I have lupus because my former dermatologist didn't know or didn't care that high doses of antibiotics over time can cause problems. And that's a problem.  Doctors need to be informed, need to be updated on new findings in their field.

Because my dermatologist was uninformed, he put me in a position to develop lupus that has the potential to last my entire life.

I don't usually blame other people for problems in my own life.  I'm a strong proponent of taking responsibility for yourself and making active changes to improve your quality of life.

This time is different.

I am only almost 29 years old, and there is nothing I can do to change the diagnosis, except to keep moving and make the best of it.

And I will warn others of the dangers of prolonged antibiotic use.

Please pass this along, for the health and longevity of the people you love!

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Current:  I have been off of antibiotics completely for four months, and my skin is better than ever! We have a RainSoft water purification system that has helped more than I ever thought possible, and I'm on a low-dose hormone blocker which has made my acne almost completely disappear!!

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