Most of this was originally under a different heading, but I have been asked by multiple people to give it it's own journal - so here it is with the latest addition included.
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Ok, here’s a few of the things that I just feel absolutely compelled to point out regarding Sarcoidosis, the medical profession and treatment philosophies. I know that some of this will seem heretical to at least a few. Alas, I feel I have to post it anyway.
Myth #1: Sarcoidosis is caused by bacteria –
There just isn’t a single shred of evidence out there for this one. I know it’s a popular theory in some circles and some very complicated sounding letters to the editor have been sent to some truly prestigious journals; but, for all the scientific jargon interspersed in such essays they remain total gibberish to those who actually speak the language. This myth has been around for over 100 years – if you really think something is holding up research, take a look at these old rehashed beliefs that have no scientific data to justify their continued acceptance in any circle.
Myth #2: Sarcoidosis is an autoimmune disease –
The definition of an autoimmune disease is a disease state in which the immune system turns against a specific protein or molecule of the body. That molecule the immune system turns on is called an “antigen” and is a requirement for a true classification of autoimmunity because it defines what the system is turned against. This is an important criterion because the “symptoms” that many illnesses cause are really the immune system doing its job (which is why I question treating low fevers in otherwise healthy people). When the body is fighting off the flu virus, the fever that occurs and the aches in the joint are not auto-immunity but the immune cascade working. Sarcoidosis has no known antigen so it can not truly be classified as autoimmune. The fact that several features of sarcoidosis model an infectious disease, some an autoimmune disease and others a neoplastic disease suggests that it is something quite different altogether. See above for why this myth might be dangerous to continuing research – do we really need another 100 years of research funding pursuing this path?
Myth #3: Treatment puts sarcoidosis into remission –
Of all the current treatment options available, none of them actually treat sarcoidosis directly. All anyone can say for sure is that sarcoidosis is a flourishing cascade of inflammation and anything that can hold that cycle up will reduce the effects of downstream symptoms. This is the same for fevers. When people take Tylenol for fever they don’t cure the flu, they just break the chain of immune system events that trigger the body to produce fever. Prednisone, plaquenil, MTX, etc, all break the immune system chain somewhere and thereby help control symptoms. Remission still seems to be completely random and based on the natural course of the disease rather than any treatment received. This is why most doctors that deal with sarc prefer to treat only for symptoms and not just because. This is also why many people with mild symptoms do well with over the counter anti-inflammatories and awareness.
Myth #4: narcotic pain medications treat pain –
This one is probably the fault of the pharmaceutical industry, but that is no reason to continue it. I don’t only wish this myth would die, I wish someone kill it swiftly, preferably so it is only remembered as a whimper. The truth is that narcotic pain medication has healed nothing – ever – I mean ever. These medications have only one really good use and it is for very acute pain but then only while addressing the cause as well. As a “medication” for chronic pain it has been proven over and over that the use of narcotics worsens the condition. The reason medical doctors don’t like to prescribe it isn’t because they are paranoiac about addiction; it’s much more about doing more harm then good. Most pain specialists will wax on for hours regarding the evils of narcotic pain medications as a complete failure to getting better. When it comes to something like sarcoidosis it is no wonder that doctors are questioning prescribing narcotics for the pains that we feel; after all, this is an inflammatory disease so anti-inflammatory pain medication would be the obvious first choice even if it, for some inexplicable reason, is considered “weak” by the general public.
Pain is a normal body response to tell us something is wrong. It is not good to ignore this response. I use the example of my dog that was notorious in her youth for playing fetch for hours; usually by that point whoever was throwing her favorite ball would notice that all of her pads would be bloody even though she was excitedly begging for another toss. Now that she has gotten older and has hip arthritis she slows down after about 60 minutes. Now, I could give her a baby aspirin before taking her to the park, and then she will play until her pads bleed and the next day I need to get her to the vet for steroid injections or she can’t walk; but, I choose to give her an hour of natural play and then give her the aspirin, this way she doesn’t do more damage. By the same token, inflammation in a human joint that is ignored and over-used can lead to more and permanent damage that no one wants.
This one is going to be hard for people to accept, it always is. It’s a pretty hard and fast medical fact that people who do forego narcotic pain medication for chronic conditions but use the appropriate treatments for the underlying cause do better and actually recover. This is true whether they choose massage therapy, physical therapy, chiropractic, acupuncture, NSAIDS or (more likely) a combination of these. In my own practice, the patients who did go this preferred route all made significant recovery if not 100% recovery from all work injuries as well as traffic accidents and whiplash. The ones who kept going to different ERs for narcotic medications were still asking me for the same a year out from the injury, and I am not labeling them as addicts, but that sure doesn’t sound like the symptoms are improving so the treatment obviously isn’t working to meet appropriate goals.
Ok, this one is flogged.
Myth #5: Prednisone is worse than the disease
Prednisone and glucocorticoids have been the mainstay of treatment for as long as they have with good reason - there is no better anti-inflammatory around. For what this drug is supposed to do, it is unmatched. Yeah, it has some nasty systemic effects when it is started and some that continue while taking it but the trade off is that nothing comes close to being as effective. Even the newest drugs available that are used for sarc simply don't have the success rates on the whole compared to steroids - even accounting for the numbers.
Another thing to consider is that steroids have a long history and there really aren't new surprises that are going to crop up with this medication. The long term side effects of having been on steroids are well known and described, no one knows what Humira and Remicaide will do to people 30 years out from treatment because they haven't been around that long.
The effects of steroids are uncomfortable and disheartening and an inconvenience - and mostly treatable or temporary. The side effects from most of the other available treatments are less well described, sometimes irreversible and, personally, downright terrifying.
Yes, I hate what pred does to me too - but I prefer it to blindness, pulmonary fibrosis, liver failure and aplastic anemia. Newer is not always better, no matter what Madison Ave tries to sell you or your doctor.
Myth #6: What is a theory…
I keep seeing the phrase “I have a theory…” and wanted to point out that there are precise definitions of what makes a theory and what doesn’t. Certainly we each have opinions, which might lead to conjecture and possibly to a hypothesis that could be tested in research. Just to appease the grammar police in me, as well as the part of my soul that screams over a need for precise terms, I offer some paraphrased explanations.
A hypothesis is a proposition which needs to be evaluated. In other words, it’s something that makes sense based on the knowledge you have but you still need to prove that it works. A conjecture is an idea which has no basis in fact at all, although there is a tendency in popular culture to refer to even the most infant of conjectures as full blown theories.
A theory is a set of related hypotheses that serve to explain or provide rules for certain phenomena. If these hypotheses can be linked together to predict behavior or events, then they form a theory. This would include the theory of relativity or the theory that germs cause disease (yeah, there was a time when that was at least as controversial as the theory of evolution).
Just wanted to lay that out there.