Out of the 50-plus medications I have taken over my life time, prednisone tops the list of being the absolute worst. Between my TBI, Crohn's and AIH, I've become no stranger to relying on medications to survive.
Prednisone, is one of the simplest medications, with hundreds of uses. It often tops lists of most essential drugs, and is life saving at times. Unfortunately, out of any drug I have taken, it has the worst side effects. It leeches calcium from bones, can raise blood sugar, blood pressure, increase or decrease heart rate and can even cause seizures. It can increase bruising (the past couple of weeks, I constantly look like I got into a bar fight), can cause depression, unusual thoughts, feelings or behaviors (more on this later), muscle pain or weakness, numbness, tingling of burning pain, and one of my favorites, rapid weight gain, swelling in your hands, ankles or feet.
Sure many other my other medications have much more scary potential side effects, like increased risk of melanoma, increased risk of cancer overall, but the incidence of these side effects are under 1%. Prednisone's side effects happen much more frequently, and have much higher incidence rates.
In other words, while taking high doses of prednisone, I become a rotund, raging bitch covered in bruises. Soooo totally sexy. The weight gain, bruising, numbness, heck I even broke a bone on my last course of long term prednisone, I can deal with those side effects. It's the mental effects I cannot deal with. Having suffered from generalized anxiety disorder, OCD, PTSD and depression for the past ten years, I am no stranger to mental health issues. Through years of therapy, and finding the right cocktail of medications, 95% of the time I feel fantastic. Though I have a safety supply of Xanax as needed, before prednisone, I had not had to take one in over six months. Like with my previous course of long-term prednisone within the first week, I noticed my anxiety come out with a vengeance. I am short with people, have mood swings (hello crying for no reason at all), and the persistent anxious thoughts. I turn into a Jekyll Hyde, and feel like I have no control of my thoughts or emotions, I feel grateful that at this point, I know what to expect. I know that I can get through this, and these are not my thoughts, that it's not who I am. It is so incredibly scary though, to know that one simple, life saving pill can cause so many issues.
Unfortunately prednisone is the drug of choice for almost all autoimmune conditions. It simple, in that it works. It's cheap, effective and easily obtained. Unlike the alternative steroid used in UC/Crohn's, Entocort (a steroid that less system and targets the GI tract) costs about $1500 per month supply. Many insurances do not cover it (for prednisone is available at a much cheaper cost) and even when they do, the co-pays can still run up to $800. The side effects are that of Prednisone though not to the same magnitude. The efficacy of Entocort is also sometimes not as great as Prednisone, so that's another deterrent for its use.
When I see both my GI and liver doc 7/15, and depending on my blood work, I'm going to ask to be taken off. My mental health, has what kept me sane through the physical pains and ills of Crohn's, and AIH. It has what kept me going, kept me positive, kept me sane. Now that it's altered, I feel worse physically as well. I just can't do it any longer, and I know that as a patient, I have a choice. Fingers crossed I'm healthy enough to get off and that my liver plays nice.
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