I recently saw an article being shared around Facebook. It said people with lupus shouldn't take
chemotherapy drugs. Who was the person who had the expertise to write this? Was it a world-renowned rheumatologist? A medical researcher?
The author's name tugged at my memory. He was featured on an episode of The Checkout not all that long ago. His job was selling blenders on an infomercial. He did claim some medical expertise on the basis that his parents were doctors. My father was an electrician, but that doesn't qualify me to rewire your house.
Hopefully, most lupies didn't fall for that.
I fell for something similar a few years back.
I went for a regular eye test, and filled in a form for a new optometrist which included all my medication (plaquenil being one medication I was taking.)
The optometrist told me I the plaquenil was damaging my macula and I should stop taking it immediately. I said I had an appointment with my rheumatologist in a couple of weeks, I'd talk to him about it. The optometrist said something along the lines of: "You could wait that long, but only if being able to see isn't all that important to you."
I stopped my plaquenil. By the time I saw my rheumatologist, my lupus was flaring.
The rheumatologist sent me to am opthalmologist.
The opthalmologist (eye specialist) told me two important things: firstly, I did not have a macular problem at all, and secondly, plaquenil maculopathy was so rare that most optometrists wouldn't recognise it if they saw it.
I never went back to that optometrist again. I did, however, see the opthalmologist every year while I took plaquenil, just in case.
So that's general advice from someone who doesn't know, specific advice from someone who didn't know, what other advice do we get?
There's always the friendly advice: "Don't let lupus control you, just get out and do what you want to do." Fine, but right now I'm in agony and exhausted and all I want to do is take some pain relief and go to bed. "You need something to boost your immune system." Yes, well my immune system's trying to kill me, so I don't want to give it any help. "You just need to get out in the sun more." Do you have any idea what happens to me when I go out in the sun? "You need more exercise." Exercise causes me a lot of pain and can trigger a flare, I do what I can, but I can't push it further. "You should take some B12." If it shows up lacking on my blood tests, my doctor will tell me and then I'll take it.
Then there's TV doctor advice. Some of the people who play doctors on TV talk shows might actually be qualified as doctors, but there's no guarantee. If they give general advice, even if it might be good for some people, no two people are the same, and lupies find we all have different experiences and different medications that help. General advice is not a replacement for your own doctor's advice.
I'm not saying there's no reliable information around. There's rheumatologists who blog, there's really good reference books, like Dr Donald Thomas' Lupus Encyclopaedia. Check who's giving the information, and what their qualifications are. A practicing rheumatologist should have a current working knowledge of treating lupus. But these are for general information. I'm sure rheumatologists who blog or write books would be the first to say that reading their work is not a substitute for seeing your own rheumatologist. Rheumatologists writing on the net and in books can give you information, tell you about what tests mean, warn you about the side effects of medication, but they haven't seen you and they haven't looked at your test results and they don't know what is the best treatment personally for you.
So what I'm saying is, accept information from informed sources (but check that those sources are informed), but when it comes to actual medical advice about your actual treatment, check with your doctor.