HLA-B27 – These used to be just letters and numbers to me. But these numbers have changed my life in a blink of an eye, as they have yours, and YOU ARE NOT ALONE. And if this blood test is positive, we both have Ankylosing Spondylitis. It is a horrible autoimmune system disease that attacks our joints and tendons, and other areas of our bodies, including our organs.
And to make it even more of a challenge, the story is different for all of us. Some have very few symptoms, and others like me are in constant pain 24/7, with the pain changing to a different place every day. Each day we have to figure out a game plan. And every day I do. I am a fighter and I hope you are too.
I have been devoted to my health for the majority of my life. My brother and I are naturally gifted athletes. Our family is a 6 generation military family, within the Army and Marines, all the way back to the civil war. Both of my parents were also extremely active.
My father was in the Marines and a semi-pro amateur basketball player after the Marines. My grandfather was a lifetime military man, and is one of the highest decorated paratrooper soldiers in the state of Wisconsin. My mother raised 2 sons alone, and was an active elementary school teacher. She also skied, rollerbladed, and danced until her early 50’s.
For over 15 years I worked out 6 days a week, ran 5 miles every morning, mountain biked up the Santa Monica mountains, went hiking, horseback riding, and ate only healthy foods. I lead this very active lifestyle until I was 40 years old. After 30 years of perfect health, I was at the gym doing reversing crunches, and “BAM”, I heard a “pop” and then another “pop”. I stopped working out and went home as I knew something was very wrong.
The next day I was sore, but still able to get up and go to work. The 2nd day, I awoke in the fetal position, and if I moved the most intense pain I have ever felt exploded throughout my entire body. I could not even make it to the phone, and I was stuck in my bed for 2 days straight. No food, no water, and no way to call anyone. After the 2nd day I knew I needed to make it to the phone. I rolled off my bed and hit the floor with such extraordinary pain; I can’t explain it to you. I crawled to the phone and called my doctor. I saw my doctor that day. And that’s where my odyssey really began.
After MRI and X-ray I was diagnosed as 2 herniated disks. One went to the right and one went the left – a very rare case. My doctor told me sometimes people with herniated disks feel no pain. This was NOT the case for me. I was in incredible pain. We tried pain medication, physical therapy (for 16 weeks), chiropractors, home exercise, and even considered surgery. I was told there was a 50/50 chance it would help, change nothing, or could make it worse. So I decide to try to let it heal naturally and adjust my lifestyle to no more lifting. Blood testing was never given to me as an option, nor even considered. Everyone wrote it off as herniated disks, and that I should just keep taking pain medication and doing my exercises.
After doing that for 3 years the pain was down, but something still didn’t feel right. I knew my body pretty well after all those years in the gym. Other parts of my body started to hurt. My knees first, then my fingers and toes.
I went to an RA (rheumatoid arthritis) doctor, as my brother was diagnosed with RA when he was 8 years old. His knees would swell up so large they would take a needle and slid it in his knee-cap to drain the yellow liquid every week. Can you imagine a boy of 8 and my mom, doing it themselves every week, and they just said it was RA. Back then doctors were gods. You listened to them, even if you thought they may be missing something. But now, we get to ask questions, do our own research on the web, and make our own decisions which way we would like to go.
So between 3 and 5 years later, other things started to happen to me. I developed asthma, even though only my mom has it, and neither of us had ever smoked. I started getting more and more pain, not only in my lower back, but middle and upper back, and my neck, too. My right hand could not grasp strongly anymore. I have switched to being left handed. I always felt extremely tired all the time. My eyes would puff once a week, and I would wake up with my right eye sealed shut. My eyes were very sensitive to light. My hips, pelvis, and buttocks started hurting for no reason at all.
By this time I had stopped exercising and gained 60 lbs. All I would do was work, come home and eat. My ribs even hurt sometimes when coughed. I also developed Sleep apnea, and had to buy a $1000 CPAP machine out-of-pocket. By the end of 2015 I had spent more than 15k in out-of-pocket expenses, even with my average medical insurance that my company provided me. I will talk about work issues in another post.
So while this was happening my doctor was great. He is from one the most distinguished hospitals in Chicago, and finally after 4 years he decided to order a complete blood test and every test he could think of… and still nothing. He couldn’t figure it out. He finally called his colleague, a rheumatologist. He was wonderful too. He tried several different tests, but he knew it wasn’t just RA, and there had to be something else wrong.
I did too, so I pushed him as hard as I could to find out what was wrong with me. I wish every doctor had to go thru the pain I had experienced for 4 years, because I bet they would have found a disease much faster than it was found in me. My life in 2015 was PAIN, EXHAUSTION, and WORK. And I got very little sleep, as the pain shot thru me if I moved in the wrong way in bed. It got so bad, suicide didn’t sound so bad. I knew I did not want to live like this.
Finally, in September 2015, he ordered the blood test for HLA-B27! After 4 years, it was finally tested for. It was being spoken about! It was mentioned to me there was such a thing! Finally, my doctor figured it out. And Yes, I was positive. Even though it was bad news, it was as if a huge weight was lifted off my shoulders, because now I could face it head on, and we could start to try to reduce the inflammation, my pain and exhaustion.
Unfortunately, that took 18 pills a day. 10 of these were very strong pain medications, most of which I am still taking. This is the only way I can live at least a somewhat normal life. If I did not have these medications, I fear I would lie on my bed every day, unable to move, and then start to consider suicide again. This many medications is not a choice for some of us, we have to use them to live. But I am a fighter, and always have been. This nasty little disease is not going to win.
Next was figuring out which medication would reduce the inflammation and pain best. We tried Enbrel at first. It took about a month to get approved for this, and then I was on it for 10 weeks and NOTHING changed. I was still in horrible pain. I then changed to Humira – an 8k a year drug. With my insurance and with help from Humira I could afford it. And after 2 months, I could feel it starting to work! My knees stabilized and held me up in an upright position.
When I saw all the side effects Humira has, and thought about how much damage may have occurred in the past 20 years without me knowing it, I decided to get my heart and lungs tested to see how they are working, and to see if there is any damage caused by my Ankylosing Spondylitis.
Now would be a good time to pause. My story will continue another time. Until then…
If you’d like to reach out to Bret or discuss anything about his story so far, you can do so by leaving a comment below. He is also happy for you to email him on his public email address at [email protected].
Does this story sound familiar? If you have a story you would like to share with others, then we’d love to hear from you.
One thought on “My Story – by Bret (Part 1)”
Thanks for sharing your story Bret. I really appreciate reading what happened and how you are dealing with it. It’s frustrating to hear how long it takes to get Dx correctly. Hopefully everyone with eye issues such as redness, pain, sensitivity to light and skewed vision will have an ophthalmologist check for uveitis. Btw, I’m one of those with AS that is HLA-B27 negative. That blood test is just part of the diagnosis process. Thanks again!