The Mighty Logo

Why It's Unhelpful for People to Offer Me Medical Advice as a Lupus Patient

The most helpful emails in health
Browse our free newsletters

Yes, I have heard that turmeric reduces inflammation.

Yes, I have looked into gluten-free, dairy-free, grain-free, going paleo, going vegan and the benefits of a raw diet.

I know about essential oils. I even use them.

I also have heard of every single miracle drink that boosts the immune system.

Yes, I also use a probiotic.

But mostly, yes, I really and truly know that people mean well when giving advice regarding what they think will help with my lupus. They tell me because they care. And I write because I want to help raise awareness and knowledge about lupus. So, I need to make clear the facts of my disease:

There is no cure for lupus. There is no cure for any autoimmune disease.

Let me give a quick synopsis of the effects of autoimmune disease. Basically, my immune system has decided ] it is in a war with my major organ systems. My organs are over here, minding their own business and trying to do their job. Meanwhile, my immune system is like, “It’s evil and it must be destroyed! Attaaaaaack!” In lupus patients, an angry and attacking immune system means that major organs are under the gun.  Which organs? Your skin, your kidneys, your eyes, your heart, your liver, your vascular system, your digestive system and even your brain.

Um… I kind of need all of those? 

Lupus is a serious disease with far-reaching effects inside the body. But when I say “lupus” sometimes people just hear the word “inflammation.” Inflammation is a pretty big buzz word right now. So, I need to take just a minute to clear up a misunderstanding about the lupus disease process and the role inflammation plays in it. The effects of autoimmune diseases, like lupus, are much more dangerous and complicated than just the word “inflammation.” They can actually result in severe organ damage and even death.

Don’t get me wrong, inflammation comes with the territory of autoimmune disease. Believe me, I feel it every day. But please understand, inflammation is the result of disease activity. Simple dietary changes will not stop the actual damaging disease activity. The key is to target my immune system with medications that will subdue it so the resulting inflammation will be reduced. The inflammation is basically my body freaking the heck out over what my immune system is launching at it. Changes in diet may help manage some of the painful symptoms of inflammation, but it will not stop my attacking immune system or protect my major organs.

Ya’ll. I kind of want to keep my organs as healthy as possible.

So, how do I do that? It seems counter-productive to healthy people, but I take medications that work to turn off my immune system so it will stop attacking me. These medications are called “immunosuppressants.” And because my immune system is such an over-achiever, it requires some pretty potent immune-suppressing medications. To start with, I take an anti-malarial twice daily. Yep…an anti-malarial. It’s nice not to have to worry about… malaria. Sorry. That’s a little lupus humor. Anyway, it has been used in the United States for many decades and, while it is not without its side effects, it is considered a safe and effective medicine.

I also take a weekly injection of methotrexate, which is a chemotherapy drug. It is known as a DMARD. Or, in fancy talk, a disease modifying anti-rheumatic drug. One of its main properties is it suppresses the immune system and has anti-inflammatory benefits. Kind of a double-whammy for lupus. The combination of Plaquenil and methotrexate is the gold standard treatment in lupus and several other autoimmune diseases.

Believe me… I do not take injecting myself with something that looks like cleaning fluid lightly. There was a lot of thought and prayer that went into that decision. And a heck of a lot of research. In the end, just like with all medical decisions, it all comes down to risk vs. benefit. It’s an unfortunate choice many people with autoimmune diseases have to make.

Protecting my organs wins. Every time.

It is kind of frustrating when you have to go to battle with your own immune system though. The immune system is usually the thing that vitamins and supplements are meant to boost. And that is exactly why I have to be very careful with natural remedies that seem to be otherwise innocuous. Sometimes vitamins and supplements have the exact opposite effect than what I am trying to achieve.  Other times, they directly interact with my many medications and can cause serious harm. I take a total of 19 prescription medications per day. That is a lot of drug interactions to consider. I do not ever ingest anything without first running it by my doctors.

The benefit of my prescription medications means my disease activity slows and the resulting inflammation is calmed. I can see it in my blood test results when I have my labs drawn each month. I can also feel it in my joints and muscles. The hope is that one day I will go into remission and not need all of my current medications. But remission is not a cure either. I will always have lupus. That is why I feel I have an obligation to educate and raise awareness. I want a cure so I do not have to continue to weigh the risks versus the benefits. I want a cure so my immune system will finally stop fighting with the rest of my body and behave already.

And all of those suggestions I mentioned at the start? I do appreciate them because it shows people care enough to want to help. And I care about people enough that I want to share the realities of my disease. I’ve tried most of those suggestions at one time or another over the last four years. I’ve found some I actually love… the smell of essential oils is very calming. And I benefit from several vitamins and supplements that are approved by my doctors. On the other side of the coin, I thought it might be helpful for others to know the real and serious effects lupus has on me, and learn a little about the medications used to treat lupus.

This is not a disease to mess around with, and it cannot be fixed with dietary modifications or supplements. It takes a team of doctors, with far more experience than the degrees I have earned from Google, to put together a treatment plan I can benefit from. The care and advice my doctors offer me comes from understanding the disease and their knowledge of me as a patient. And that is a combination of factors which results in medical advice I can trust.

Thinkstock photo via gpointstudio.

Originally published: August 22, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home