Remember the commercial back in the 80’s for Hair Club for Men? Take a quick look, it’s worth it, we’ll wait… It is brilliant piece of marketing where you know the president cares about his company and believes in his product because he tells you he is also a member of his elite hair growing club. Although our president and founder, Brian Overstreet is probably going to get mad at me for comparing AEI to HCM, I indeed am not only our Executive Vice President, but I’m also a patient.
In October of 2011, I was kind of diagnosed with Sarcoidosis (or Sarcoid) and/or Ankylosing Spondylitis (AS). The “kind of” and “and/or” is used as a modifier because I was presenting symptoms of both, but there was no clear cut evidence of either. Finally, a bronchcoscopy confirmed the Sarcoid diagnosis, but didn’t explain the intense back pain. To add to the confusion, I have the HLA-B27 genetic marker which is highly correlated to AS.
For those who are not familiar, both Sarcoid and AS are manageable, but incurable life-long diseases.
Without getting into too many details, throughout the last 2 years navigating the medical system, I saw 1 primary care physician, 3 rheumatologists (in 3 different health systems), 1 pulmonologist, 1 interventional pulmonologist, and 1 ophthalmologist (Sarcoid sometimes can affect the eyes). That’s 7 doctors and 7 different opinions. Although diagnosed with Sarcoid, a largely pulmonary disease, the pulmonologist could only treat if there was a problem in my lungs, which there was not. So they had to point me back to the Rheumatologist for the joint pain. However, since Sarcoid is not truly a rheumatologic condition, any treatment I received was for the joint pain itself, not the underlying cause.
The plan, as it was communicated to me, was that I was to continue this course until the pain subsides or it doesn’t work anymore. My wife (then fiancé), being the fantastic nurse that she is and very much wanting (insisting) me to be healthy for our wedding day, was very concerned with the doctors’ plan for long term NSAID use. On my next visit, I asked about the potential side-effects. Without any discussion, I was told he would prescribe omeprazole to combat any potential stomach issues. On top of all of this, I was also prescribed allopurinol, a gout drug. He said he has also seen it work for Sarcoid in the past.
So now, I was taking a drug to alleviate symptoms of an underlying condition(s), taking a different drug to combat potential side-effects of the first drug, and then taking another drug off-label, on an off-chance that it would work. At first, I didn’t care. As a patient with a newly diagnosed disease all I wanted to do was “fix it”, and if fixing it wasn’t an option, forget about it. And, after all, who was I to question what the doctor said?
I’m a data geek, not a doctor, but after a while I did know that although medically sound, it didn’t feel right for me. I won’t list out the potential side-effects, but I invite the reader to click on the drug names above. See their safety profiles on our AdverseEvents Explorer platform.
There are some serious negative outcomes to long term use of all of these drugs and a lot of side-effects that were never communicated. At no point during the course of my treatment were my options presented to me and I was not told what the treatment pathway looked like, other than what I was doing now was going to be better than what would come next. Benefit to risk was not discussed in detail.
After a few more months of this treatment, one day I decided to stop taking the medications all together. I told my doctors so they knew and not one had an objection since these medications aren't treating the disease. There are days where I wake up sore and there are days where my back hurts. I’m sure at some point, I’ll have to revisit some, if not all of the doctors and my fingers are crossed that in my case, the HLA-B27 gene doesn’t correlate to AS. However, overall I feel great and I am able to participate in almost all of the activities that I did prior to October 2011.
Luckily, this story does not have an unhappy ending as many of ones like it do. However I can’t help but think back on the last two years and isolate specific instances where having a transparent conversation around my medication therapy would have made me feel more at ease and would have helped me choose a treatment pathway that was right for me. If healthcare providers had tools that guided them through this transparent conversation, it would be very easy.
As patients, we deserve the opportunity to play a role in our healthcare and create an environment of shared decision making.
I keep my story front of mind with the work that we are doing at AdverseEvents. Although we are a for-profit enterprise, we are ensuring that the patient always remains at the center of our focus.
We are not only working on fantastic applications and analytics that will reduce costs and improve outcomes, we are also patients ourselves.
To that end, please download our complimentary report analyzing the latest release of the FAERS dataset, in order to ensure that you have all of the information on the drugs you are taking, prescribing, or using in your formulary.
Also, make sure to subscribe to our RxView Newsletter to get weekly updates on the world of drug safety.
Executive Vice President