It's Not Working: Dealing With Treatment Disappointment

“Try this, it will totally change your life!”
“This amazing drug is now over the counter, I use it every day!”
“All I need is 100mg of this and I'm pain-free all day!”

Then you try it.

Nothing happens.

You give it a week or a month, and you feel just as crappy as you did before.

This treatment didn’t change your life or allow you to be pain-free all day. All it did was fill you with endless disappointment.

This is all too common, and believe me when I say, you are not alone.

Ankylosing spondylitis is a very widespread and diverse disease that finding a treatment that works for everyone is like launching a basketball into space and hitting an inhabited planet. It's a lot of blind guessing and trial and error.

Here is how I deal with treatment disappointment.

Treat with a grain of salt

No, I don’t mean you can clear up your pain and stiffness with a single grain of salt, but based on some of the suggestions I’ve seen, I wouldn’t be shocked if someone suggested it.

What I mean is don’t put too much into new treatments. Not saying that trying new things is hopeless, but understand that what works for one person might not work for most. Just give it an honest try.

From my experience, it takes about a month for a new treatment to really work. If, after a month, you can honestly say it’s not worth your time and money, feel free to stop.

Even if 90% of your support group says it’s the best treatment under the sun, don’t be discouraged if it doesn’t work for you. Ten percent is still a sizable number in our community, so you are not alone.

Try something new

Every failed treatment is an opportunity to try something new. There are now countless treatments that patients like us can try. NSAIDs, DMARDs, biologics, and supplements. When I was diagnosed, there weren’t any of these, and now it's like a Vegas buffet of options!

Talk to your doctor and find out what options you can try and which ones are safe to try together. Then go into it like a championship boxer! Pump yourself up, get excited, prepare for a fight, and know you are going to win.

Yeah, you might get knocked out in the 2nd round, but give it your all in the first. Know that you tried, and prepare yourself for your next fight.

Know when to quit

When it comes to treating AS, there is a lot of “brand loyalty.” Some patients stay on the same biologic for a decade and they are doing fantastic. But then, one day, it stops working.

This happens to almost every patient I have talked to who stuck by their treatment. “I've been on ABC for 12 years, but I just wasn’t getting the relief I once felt.” If this happens, it’s okay to quit.

Even though your treatment is “biologic” it’s not conscious. It will never know if you quit it and move onto something else. No feelings will get hurt, and it won’t sit in the corner crying.

Most of you will laugh at this, but others know exactly what I am talking about. In the treatment world, brand loyalty runs high. You point to the TV and say “That’s what I'm using!” “I'm on team Phil Mickleson or Cindy Lauper!”

And guess what, Phil and Cindy won’t notice you’re gone either.

If it's not working, know when to quit.

CBD and MMJ

I wanted to close with this sometimes controversial treatment option. Cannabis and its derivatives. As more and more states have legalized both recreational and medicinal marijuana, more and more legal treatment options have become available. And this, at least for me, has led to a lot of frustration.

Even though a state has legalized cannabis, it does not always mean that it is available to everyone. For example, I work for a public school district, and the day after my state of Missouri legalized medicinal marijuana our principals held school-wide meetings to inform us:

“Just because it is legal in this state, does not mean it is legal here. We don’t do drug testing, but if you are injured and are required to see a doctor to determine 'workman's comp' you will be tested, and they do not want to see it in your system."

It’s also not always the right treatment for everyone.

For starters, not everyone is comfortable trying it. Secondly, when it comes to CBD and other derivatives, there is a lot that is unknown. It’s not like there is a formula that these companies need to follow. Nor do they need to prove that it actually works. Spend $60 to $200 and see what you think. That is a huge commitment to try something that might not actually be a valid treatment.

The peer pressure is huge, however.

Log onto any AS or AxSpA support group and you will hear people going wild for MMJ or CBD. It's the best medicine! It got me off pharmaceuticals! I use it every day and it changed my life!

It leaves people like me who aren’t able or unwilling to try it like we aren’t doing enough. Like we are destined to always be in pain because our state, employer, or family won’t allow it.

And, the fact of the matter is, you don’t know if it will actually work for you!

I’m just saying, if it's not available to you, just let it go.

It’s not working!

I know how much you want your new treatment to work, and I know how disappointing it can be when it doesn't.

I want you to know, you’re not alone.

Different treatments work for different people and what works for one person might not work for you.

If you “fail” on a treatment, just let it go and try another one.

The all-you-can-eat buffet is endless!