#RABlog Week, Day 3: In Defense of Biologics


Today’s #RABlog Week prompt is Biologics can be scary. This is true and it has led to a lot of misperceptions about these kinds of medications. My goal today is to bust some myths about Biologics. Settle in with a cup of tea. To do this subject justice, I had to go a bit long.



Your doctor has talked to you about starting a biologic for your rheumatoid arthritis (RA), so you do the natural thing for anyone with an Internet connection: you ask Google. Maybe you also ask other people you know who have RA. And that’s when you see and hear some comments that scare the crap out of you. Such as: 

“Don’t take those drugs, they are poison.”

"I’d never put that in my body. I’m going all natural.”

“I went all natural and I’m in remission.” 

I believe these types of comments reflect a lack of understanding of not just the Biologics, but the disease they treat. 

A serious solution 
I’m not going to lie to you. Biologics are a serious medication. They have a black box warning, which means that some of the serious side effects can be fatal. Luckily, the serious side effects are also in the ‘rare’ category.

That doesn’t change the fact that these types of side effects are very serious. It doesn’t change the fact that Biologics are immunosuppressant drugs, which has the potential for a whole other list of consequences.

But they are not poison. If they were, the FDA wouldn’t have approved them and doctors wouldn’t prescribed them. And no, thousands of doctors all over the world are not in cahoots with pharmaceutical companies, mindlessly prescribing dangerous drugs so they can get money. Because that’s one of the stories out there, as well.

Biologics are a medication that is prescribed because in addition to the serious ones, they can also have quite miraculous consequences and more on that in a bit.

Medications — all medications — have two types of effects. The beneficial ones that successfully treat the disease for which there prescribed. They also have the potential for other effects that are not related to treating that disease. If you look of any medication, you will see a list of side effects divided into categories such as Common, Less Common, and Rare. If you look closely at that last category, you’ll be tempted to go stick your head in the sand for a couple of years.

Informed consent can be scary.via GIPHY

A serious problem 
Biologics were developed as a serious solution to a serious problem. Some rheumatologists consider RA to be a medical emergency. Once you start researching RA, you begin to see why. This is a systemic autoimmune disease. It doesn’t “just” affect the joints, it also affects other systems in your body, such as your vascular system, and internal organs.

Yikes, right? Hang in there — I’m almost done with the scary information. 

RA inflammation is nasty. Left to its own devices it eats the cartilage in your joints, causing deformities and intense pain. But that’s not enough for it. RA inflammation can also damage your internal organs. That’s why historically people with RA have had a 10-year shorter life expectancy than the general population. It’s called the mortality gap and it is largely due to the effect of RA inflammation on the cardiovascular system.

But what about those who went into remission by taking vitamins and eating a particular diet? I have three comments on that. One, there is no scientific evidence to show that RA can be cured, period. Two, there is no scientific evidence to show that diet and vitamins can cure RA. That said, there appears to be different types of RA, some of which may respond to diet. Does it affect symptoms or the underlying disease? We need more research to say for sure. And lastly, three: spontaneous remission does happen. Rarely, but it happens. So do periods of low disease activity — RA ebbs and flows.
   

From worst case to best case 
I’m the worst case scenario. I grew up in an era when there were no treatments for RA. Back then, the progression of the disease took you from walking and functioning to a wheelchair as inevitably as sunrise and sunset. I was 14 years old the last time I walked. I had bilateral hip replacements when I was 16. That was also when I got the power wheelchair that enabled me to leave the hospital bed in which I had spent the previous two years and go out and live my life.

These days, there are treatments. In fact, the development of new treatments have accelerated in the last 15 years or so. We have half a dozen non-biologic DMARDs (disease modifying antirheumatic drugs) and close to a dozen Biologics. The availability of treatment that have the potential to be extremely effective have caused a change in how RA is treated. No longer is it “go low and go slow,” which leaves the RA to feast upon your body. Now it’s early and aggressive.

And this is where the good news starts coming in. Now, despite still using a wheelchair, I’m the best case scenario. Because the meds I’m taking are working. 

The miracles 
Because of these treatments and the change in the approach to treatment, RA is now increasingly considered an invisible illness.

Mind-boggling. I don’t think you can truly know how miraculous this development is unless you grew up in a time when the prognosis was inevitable and daunting: damage, deformity, and disability.

These days, people are going into remission. Remission! And if they’re not going into remission, many have low enough disease activity that they can function close to normally.

Other good news: because of the Biologics, the mortality gap is shrinking. People with RA are living longer and healthier lives. I’m one of them. Eleven years ago, I had a huge flare that almost killed me.  I got funding for Biologics and for the first time in my life, my RA is under control.

Not everyone responds to the meds currently on the market. We need much more research to meet the need. Many more drugs are in development. There is hope. 

What about the risk? 
The Biologics do come with risks. Serious side effects, the consequences of being immunosuppressed, and the potential for developing certain kinds of cancer (although new research shows that this doesn’t include lymphoma).

Again: yikes!



But it’s important to know that these are risks, not certainties. Many people take Biologics for years with only manageable side effects and during that time, they are living their lives to the fullest.

Each one of us have to weigh the pros and cons and make the decision that is right for each of us. But I believe it is essential to make sure that your decision is not based in fear or only knowing half of the story. The purpose of informed consent is that you know the risks and potential consequences of the decisions you make. Taking the meds has a risk of potential nasty consequences. Not taking the meds has a certainty of nasty consequences.

Talk to your doctor about how big the risk is. Compare it to the other risks you take it every day. For instance, I bet you drove in a car today, despite the significant risk of being in an accident. Did you take a shower this morning? That carries a risk of falling and hitting your head. Did you kiss your beloved? You could have caught a nasty virus.

Life is full of risk. 

I chose to take the risks because I wanted to live, not merely exist. My best option for that was medication. And every day, I am grateful for the consequences: the ability to live my life.
   



Comments

Brenda said…
Hi Lene,

I'm with you. I didn't want to continue living at status quo. I knew that a change had to be made. Making that decision to take a biologic, turned out to be a great one for me. I got my life back, while not perfect, still a life. I think the benefits far outweigh the risks.

I am still on my first biologic after 15+ years. I realize that is rare.

Thanks for sharing the other side of this.

Brenda
Cheryl Wright said…
Great write up, Lene! I can't tell you the number of times I was told that if I only ate right, eliminated certain foods, took antibiotics, etc, etc. Not to mention that I was crazy to go on biologics. Simply put, That 1st biologic saved my life! Yes, I was to that point....the pain was out of control and I had no use of my hands, arms, no longer able to walk. Totally dependant on others. Not a way for anyone to live. So, yes, I'm in the "extreme treatment club". I'll do what needs to be done to be able to live again. I've since progressed to the infused chemo club....don't even get me started!
Rick said…
Lene, we live in such great times. I missed the time when there were no biologic medications. It is amazing what medicine is doing and they all come with risks. Here is a great example.

There was a scientific paper published in 2002 that estimated roughly 2-4% of all people who use insulin die in their sleep due to low blood sugar. It is worse for people below the age 40 where 6% of all people in this age group die in their sleep due to low blood sugar.

Now low blood sugar is a terrible issue and yes the ambulance has joined me in my bedroom a time or time two or maybe ten. I have been close and while I tend to make fun of myself it is not a laughing matter.

But with all of those deaths and the risk would I stop using insulin? Heck no. Why? I would die in a few days. It is a necessary thing. I treat RA medication the same. It is necessary.

Your article is so informative. Thanks for writing it.

Linda Perkins said…
This is a really great article, Lene. I am fortunate to not need heavy duty meds like biologics at this point, but I know there certainly may be a day when I do. It is helpful to get your perspective. My mother-in-law almost died from sepsis last year due to her ulcerative colitis, another autoimmune disease. A biologic saved her life and has immensely improved her quality of life! Yes, they work great for many people. I'm glad I know people who have had positive personal experiences so that if I ever need one, I will be less afraid and more confident.
Linda Perkins said…
This is a really great article, Lene. I am fortunate to not need heavy duty meds like biologics at this point, but I know there certainly may be a day when I do. It is helpful to get your perspective. My mother-in-law almost died from sepsis last year due to her ulcerative colitis, another autoimmune disease. A biologic saved her life and has immensely improved her quality of life! Yes, they work great for many people. I'm glad I know people who have had positive personal experiences so that if I ever need one, I will be less afraid and more confident.
cathy kramer said…
Several things here. First, I LOVE that picture of you and The Boy! Second, biologics are scary. That's why it took me six years to agree to them. But, like you, my life changed for the better. Finally, best advice I received surprises most but it was from my naturopath. When I discussed all my fears about biologics, she asked a simple question, "What do you want from life? Are you able to do it without biologics?" I wasn't. Except for the weight loss, I can do everything else I want. Grrr....

Your story is always so amazing. I was sharing it with Sophia recently. She wanted to know how it affected your attitude towards life. I told her you are one of the most positive friends I have. It's true. You understand reality but stay so positive for yourself and all of us. Thank you for that.