Questions To Ask Before Trying A New Treatment
There are almost too many treatments out there for ankylosing spondylitis. While I thoroughly enjoy all the options, knowing which one is the best is downright perplexing. No matter what your doctor prescribes, these are some questions you need to ask yourself before landing on your next treatment.
1. Do I know anyone who has tried this?
I’ve written before and I will stand by it forever, there is power in the community. There's roughly 2.7 million people in the US with some sort of spondylitis. And, a few of them have tried the treatment option that you are about to try.
While not every patient is the same, and everyone reacts to a medication a little differently, it is still good to know what people are feeling. If most of the people you talk to experienced extreme exhaustion, for example, you might not want to try that if you need to stay active. On the other hand, if a treatment seems to have really good reviews from your community, you might want to put that on the top of your list.
Whenever I review a medication, I always start with a disclaimer: “Everyone with AS is different, what works for one person might not work for another, and vice versa.” The opinions of a peer might not end up applying to you, but, in my experience, it is always worth asking.
2. How much will this cost?
Money is the mother of all disappointments. You find something you love and then you look at the price tag. This applies to Lamborghinis, sofas, clothes, and that brand new state of the art medication.
Fortunately for some of us, we have some kind of insurance that will do a pretty good job of covering the price. If not, generics have made several medications within grasp. While cost should not be the reason you don’t try a new med, unfortunately, that is sometimes the barrier.
My doctor put me on a DMARD that he felt was really going to help. I have really good insurance and the most I will pay for a medication is $10. So, I was very surprised when I went to pick up this DMARD and the pharmacist wanted me to pay $50 for a one month supply. “Without insurance it’s $650, so be thankful!” She said. No, I was not thankful.
Chronic conditions mean chronic payments. I knew one bottle of this medication was not going to cure me, so I knew I would not be willing to spend $50 every month for it. I called my doctor for a new option. Know yourself, and know if a treatment will be worth it in the long run.
3. Are there hidden costs?
As a subset of the above topic, I wanted to point out that even though insurance is amazing at covering the cost of the drug, it might not be amazing in all areas of treatment.
I pay the standard $5 a month for my at-home injectable biologic. So, when my rheumatologist suggested I might want to try infusions, I had no reason to believe the cost would be different. It was!
While insurance still did a great job covering the cost of the drug, it does not do the same for the actual infusion process. Insurance considered an infusion to be a hospitalization, and that is significantly more! Check what insurance covers before trying something new.
4. What kind of commitment is this?
Asking questions like “How difficult is it to take this?” Or “How will this treatment fit into my day?” Are all valid questions when starting a new treatment.
The biologic infusion mentioned above takes 3-4 hours to administer. If you work full time and have other commitments, 4 hours is a huge chunk of time, even though it’s usually once every few months.
I had a treatment suggested once that required me to give myself a mid-day daily injection. Carrying pills around in a school is difficult enough. I could only imagine taking time during my workday to duck off into a bathroom to mix two vials and inject them.
These treatments, no matter how amazing, would not work for me. I'm just not ready for that kind of commitment. If you are like me, a high commitment kinda drug is probably not for you, so make sure you ask.
5. What are the side effects?
This question should go without saying, but I wanted to include it because it's one of the big ones. What is the chance of a positive effect worth to you?
I took one medication that made most of my hair fall out. It also didn't do anything for me after 2 months. The “cost” did not match the product. However, if that drug made me feel amazing, I wouldn't have cared about my hair. I probably was going to lose it anyway.
The good and the bad of a treatment need to be fully understood before starting anew.
It’s important to remember to write down everything you talk about with your doctors when it comes to treatment. Ask the above questions and anything else you can think of and be sure to write down the answers so you can talk it over with your family or your community.
I also recommend that when you do try a new treatment, take notes on how you feel, how long it takes to work, how long it lasts, and any side effects you might experience. This information will be useful the next time you talk to your doctor to update him or her on how well this treatment is working.
Good luck and I hope you find something that works!
Other than back pain and fatigue, what is the most common symptom that AS patients experience?