Newly diagnosed? Searching for an alternate to the scary-sounding drugs your doctor prescribed? That’s normal. If there’s a natural cure, spending thousands of dollars on medicines with long lists of serious side-effects doesn’t make sense. Unfortunately, there’s a long list of unscrupulous people willing to take money from anybody willing to hand it over, regardless of whether or not what they’re selling really works. Others might not be deliberately deceiving people; they just don’t realize the harm that they’re doing. Regardless of the motivation, there are many people out there trying to push alternative treatments for RA. I was surprised, then, at one conversation with a doctor:
At least with RA, the treatment is clear. Nobody’s trying to talk you into doing something different. I feel bad about all the fibromyalgia patients who have to deal with scams everywhere. I even called a few of those phone numbers to see what they were saying, and it’s just a way to take people’s money; those things won’t help. With RA, there’s nothing like that for patients to deal with.”
My rheumatologist said this. Laughing, I told her about the gin-soaked raisin cure. She’d never heard of it, but admitted with a grin, “Well, I guess if you eat enough of them, you won’t notice your pain.”
I was shocked that she had no idea what her patients face. Do doctors really not know that everybody and their brother has a sure-fire “cure” for RA, and patients face quite a battle when well-meaning family and friends present us with all the things they think we should be doing instead of following our doctor’s advice?
For everyday short-term illnesses that just need a quick round of antibiotics, not a lot of explanation is needed. People are familiar with that. RA is different. When I was faced with the need for life-long treatment, it would be great if my doctors had provided me with solid information to combat the nonsense I’m inundated with on a daily basis.
Most of us don’t share our medical information with other people, but when friends know you’ve been to the doctor again, it’s natural for them to ask, “What did the doctor say this time?” When the doctor just gave you a diagnosis of rheumatoid arthritis, the friends only hear “arthritis” and respond with some variation of, “Oh, I have that in my neck/knee/little finger; just take a motrin/ibuprofen/tylenol plus.” The first thing doctors should tell RA patients is that this is a disease in which the immune system starts attacking healthy tissue (both joints and organs), and it is nothing like the wear-and-tear arthritis that many people get as they age. The second thing RA patients need to hear is about the class of medicines called NSAIDs, and that they are not sufficient treatment for RA.
Next some well-intentioned person will say, “Doctors prescribe too many medicines without even checking how they interact with other things you’re taking. Don’t let them give you a bunch of pills.” Or my favorite: “Medicines are toxic; you shouldn’t be taking that stuff.” Doctors need to explain what “early, aggressive treatment” means. Patients need to understand that the consequence of CAM instead of DMARDs is permanent deformity. Doctors need to thoroughly explain the treatment plan for RA, explain about combination therapy, and explicitly state that all the prescriptions are (a) necessary, and (b) not going to interfere with one another. Patients needs to understand all this well enough to explain it to friends who try to dissuade them from following their treatment plan.
Family and close friends will start surfing the net, somehow certain that the physicians who’ve dedicated their lives to learning about this disease, searching for a cure (or at least effective management of symptoms), have missed something so obvious that a simple consultation with Dr. Google will clear everything up.
Patients’ email boxes are filled to overflowing with links to websites, and phones ring off the hook as friends follow up to make sure we got the information they sent us and we are now going to ignore our doctor’s expert advice in exchange for the word of a stranger with questionable credentials (if it’s on the internet, it must be true). Doctors can help their patients by knowing about the internet “cures” and teaching patients how to address those issues.
I imagine that people with other chronic diagnoses face similar issues. With RA, some of the “cures” most frequently recommended by people with no medical credentials are:
Antibiotic protocol (Road Back)
Treatment for Chronic Lyme Disease
Then there are people trying to sell stuff:
Various improvements on glucosamine
I’ll do some future posts with more information about some of these so-called cures (and edit this to add links to those posts as I get them up). Any you’d like to add?