From Vitamins To Biologics: Finding The Right Treatment
"Has he tried yoga?" makes me cringe every time I hear it now. When I share Keegan's experiences with treatments, what has and hasn't worked, this seems to be a recurring theme. Keegan does do yoga regularly, and it helps, but not with his core ankylosing spondylitis diagnosis. When someone we talk to asks "He tried [treatment]?" it irks me to my core. We've tried almost everything: diet changes, yoga, NSAIDs, biologics, medical marijuana, warm baths. You name it, he's tried it.
So how have we kept sane through this process? While I can't tell any one person with AS what will work for them, I can at least share how we've made decisions, and hopefully will help others make similar decisions for themselves.
1. Knowing your body with ankylosing spondylitis
Awareness and knowledge are very different here, and we learned this the hard way. When Keegan was first diagnosed with AS and his rheumatologist suggested going on a biologic, I only saw the side effects. Cancer? TB? No. What did this doctor know? If it's an autoimmune disease, we'll change his habitat. It'll totally change Keegan's life.
We tried it all
So we went gluten-free, sugar-free, vegan, vegetarian, etc. We added fish oil, turmeric, garlic, and other vitamins. None of them significantly improved his symptoms. It was heartbreaking for us. I placed so much faith in changing our lifestyle to help his pain. We went back to his doctor and asked if there was another option before biologics. He recommended an NSAID and it helped Keegan a little bit.
Ultimately, I had to accept that while I could Google all I wanted, I would never be able to gain insight into AS, the research, and treatment options. I just didn't have enough hours in the day. I had to learn how to leverage his doctor better. Our check-ins became much more of a question and answer session than a check-up.
2. Internet doctors shouldn't help choose your treatment
Even though the NSAID was helping, it wasn't as much as we hoped. So what did I do? I hopped on the internet. I spent hours and hours on forums reading what worked for others with AS and similar diseases like rheumatoid arthritis. Another promising treatment came up: medical marijuana. So we went on the search and figured out how Keegan could take it.
Once again, it helped somewhat but never to what we had read online. Some had claimed it totally relieved them of pain and immobility. Keegan wasn't near that. Yes, it helped him manage his pain, but he still couldn't do much walking. Keegan even took up physical therapy. Still no luck.
3. Weighing the cost and benefit of ankylosing spondylitis treatment
I was desperate at this point. I had written off biologics, but one night I read stories online that gave me some hope. People's lives flipped completely. Could a medication with such scary side effects be worth it? At his next doctor's appointment, we revisited the topic. His doctor outlined why biologics have those side effects and how infrequently they occur. Even so, the data was correlational, so it was tough to know if the medication was the reason for all of the side effects.
I looked at Keegan and he nodded. "I'm not living right now. If this changes my life, it's worth it."
He's been on a biologic for 2 years now and it has changed his life. As some of you may have read previously, going on it highlighted that his hips were experiencing pain from an undiagnosed disease: osteoarthritis. In combination with Humira, NSAIDs, medical marijuana, yoga, and vitamins, Keegan's life has changed dramatically. He can tie his shoes again. Pick up our daughter off the floor. Curl up with me on the couch during a movie.
4. Staying open to treatments is critical
Part of the flaw in my thinking was that one treatment would solve all of Keegan's problems. Rather, we had to work with doctors to understand the underlying diagnoses to know what was causing the problem. Was it his immune system? Was it chronic pain? Was it osteoarthritis? All of those have connected treatments, both homeopathic and pharmaceutical, that can help. Rather, we had to see treatment as a carefully concocted amalgam. So, we've landed on a biologic to decrease back pain and slow down the progression of the disease. Keegan takes medical marijuana for chronic pain through a pain specialist. Finally, his double hip replacement totally solved Keegan's hip problems.
So to Auldyn 7 years ago: be patient and stay open to options. It's a scary journey, but someone and something will help.
How often do you experience flare ups?