So far, so Enbrel (part I)
Judging by the pic above, you can clearly see I’ve taken quite a few doses of Enbrel. As you can imagine, it was super fun taking all these out of my sharps container (read: sarcasm). But I did it for a point (get it? A poi- nevermind). The ultimate question I’ll be discussing is: do I feel better yet??
The shocking and revealing answer to this is: yes and no.
What has vastly improved in my condition is, generally speaking, my ability to walk long distances. I no longer spend hours at a time browsing Amazon in hopes of finding the perfect cane/seat. (Really, why is it so hard to find one with good reviews?!?)
This improvement is a big turnaround. Just last November my husband had to convince me it was OK to ask for a wheelchair at a museum we visited.
I haven’t tested my maximum distance lately, but as far as day to day activities, my mobility (except for days that I flare-up) has improved and I COULDN’T BE HAPPIER ABOUT THAT. Rolling over in bed is better, but still somewhat painful. I am sleeping better but standing up from a seated position is still hell.
Sounds ambiguous because it is
Even with these graces, I am still left with unfulfilled expectations. When I first heard of biologics, I was told it could be what I needed. The drug in question, of course, is Enbrel, a TNF inhibitor. Interestingly enough, I never looked up what it was. Of course, I checked out the side effects like everyone else. But if you asked me how it worked, I’d draw a blank.
So I did some research…
TNF is short for tumor necrosis factor. It is a natural protein that is part of the normal human immune response. TNF triggers inflammation that aids in the process of “fighting off any threats”. It is part of how we combat a cold or skin infection. It also causes other unpleasant symptoms like fevers, body aches, and low blood pressure.
In people with normally functioning immune systems, TNF is released. When the fight is over, TNF is inhibited. It does its best Rambo impression and fades away with all the other legends.
For others, such as myself, the body floods itself with TNF inappropriately. This TNF-Alpha attacks healthy parts of the body it shouldn’t, like our joints.
Seriously though, screw TNF
This is where Enbrel comes in. Enbrel is a TNF inhibitor that is a fusion protein made with recombinant DNA. It is manufactured from multiple DNA pieces that attract the receptors on TNFa proteins and mimics the body’s natural TNF inhibiting process.
This tricks the TNFa into binding with the Enbrel chimera protein instead of normal healthy tissue in the body. The purpose being that it prevents excess TNF from causing further damage. Enbrel, as well as other TNF inhibitors like Humira, are the most prescribed treatment for autoimmune disorders, in which excess TNF is a problem.
This is a great discovery. This drug directly counteracts the protein that hurts the body. But, there is a downside.
Now the downside to Enbrel
TNF gets the name “Tumor Necrosis Factor” due to first being discovered in the late 1970s to have a “capacity to suppress tumor cell proliferation and induce tumor regression”. Necrosis, meaning cell death, meant that TNF kept cancer cells “in check”. We thought TNF to be protection from cancer as well as other undesirable things, such as bacterial infections.
That being said, TNF is now considered a “double-edged sword“. In regards to cancer, some are now known to be inhibited by TNF, while it’s cellular promotion qualities have been found to promote cancer growth for others. Here is a link to a study that concludes that while TNF can promote certain cancers, it can and will likely be used in the future, to treat cancers.
If you recall, TNF is part of a normal functioning immune system, but drugs like Enbrel were made to suppress malfunctioning systems. Due to this, the FDA continues to keep health care providers updated with information on the potential ill effects suppressing the immune system with TNF inhibitors can have.
That is why it is mandatory for patients to be tested for TB prior to starting TNF-inhibitors, and yearly thereafter. Also, why one of the potential side effects for TNF inhibitors is lymphoma.
There are pros and cons to everything
I accept this drug on the basis that I am fairly low risk for these complications. But, please do the research for yourself and make the best-informed decisions for your own health. For me, a 32-year-old woman living in a city that has a fairly low prevalence of active TB, I am not at high risk. Also, the chance of developing lymphoma is seen to be higher in adolescents, according to literature that I have seen.
My bone to pick with Enbrel doesn’t lie in what I’ve laid out above. My issue is with how well it works. In the second part of this post, I am going to be discussing clinical trial results, side effects, and the efficacy of Enbrel. If you have any questions or comments let me know!
Sending gentle hugs and light,