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To treat this disease or not to treat, that is the question with sarcoidosis. But, it is only one question. There are others that are equally as important. How long to treat the disease is one and another is what to treat the disease with.

Let’s be clear on one thing before I say anything else: there is no cure for this disease. Treatment, when given at all, is for symptom management only. I think this is important because it can also be confusing, as some people truly do get better with treatment. Others, though, do not. In fact, sometimes people get worse, while others simply stabilize with treatment. Still, a great many with this disease don’t require any treatment at all as the disease is either asymptomatic or very mild.

Another interesting tidbit about treatment for sarcoidosis is this…the treatment itself can cause more harm than good; yet for some people with this disease, despite these risks, treatment is life saving. Scratching your head yet? Well, it gets even more confusing…just wait.

The most widely used, or as I like to call it, the “go to” drug, for sarcoidosis is prednisone. Often high doses of it, too, for long periods of time. Prednisone is a synthetic drug, similar to cortisone, and is used as an anti-inflammatory or immunosuppressant medication. You see, the problem with sarcoidosis is that it causes widespread inflammation throughout the body as a result of an immune system overreaction to something that was once real or imagined. With sarcoidosis, the immune system’s off switch is broken; this causes the body to remain in an unnecessary high state of alert trying to heal an imagined or now retreated foe. When the body remains inflamed too long, the immune system’s “defender cells” can begin to form clumps that then interfere with proper organ function that over time can lead to organ damage. The goal of a drug like prednisone is to reduce the inflammation and reset the immune system and break up these fighting cells. Sometimes it works, and sometimes it doesn’t.

But, long term prednisone use comes with its own risks…excessive weight gain, psychological effects, high blood pressure, glaucoma and cataracts, osteoporosis and thinning skin to name a few.

There are other powerful drugs, too, that can be used to suppress the immune system if prednisone does not work. Drugs like methotrexate which, while taken in lower doses for sarcoidosis, is actually a chemo drug. Then there are drugs like Cellcept, a drug created to help transplant patients minimize the risk of organ rejection but used in sarcoidosis to calm the immune system. Oh, and there’s a drug called Plaquenil created to treat malaria but again is used with sarcoidosis as an immunosuppressant. There are others too but by now you are probably getting the idea. There is no drug created specifically to treat sarcoidosis and all of the medications that are used are complex drugs with a myriad of debilitating and in some cases damaging side effects. Yet for some people, if sarcoidosis itself is left untreated, it leads to the need for organ transplants or death.

Unfortunately, there are also the snake oil salesmen out there, too: people who promote cures for this disease just trying to make a buck off the fears and uncertainties of the weak and vulnerable. I always caution newly diagnosed people that if someone is trying to tell you that he has a cure for this disease, he is not telling the truth. Some people like to share their stories by saying that they did this thing or that and suddenly the disease just went away. In reality, it’s likely that was the course the disease was going anyway with that particular person.

Of course, there are things those of us with this disease can and should try to do to better manage it. Eating a healthy or clean diet is one, and so is trying to find a way to get regular exercise. And there are natural things that can be used to help some people manage their symptoms better, essential oils, supplements, etc…but there is absolutely no cure for this disease. Period. The reality of this disease is that it does not play out the same way for any two patients, not the course of the disease or the need for treatment or the response to treatment. Those of us with it are truly all snowflakes. No two of us are the same. We don’t all have the same symptoms nor are we diagnosed in the same way (more on that in upcoming post).

So, I say all of that to say one thing…I never tell others what they should or should not do regarding treatment. This disease is too complex for me to even begin to guess what might work for someone else and the question to treat or not treat, for how long and with what is very personal indeed. It truly is a confusing and difficult question to answer…no doubt about it.

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