I was approved to receive ACTH, acthar, a drug that will stimulate my pituitary gland to activate my own adrenal glands to produce cortisol. This drug will replace prednisone. I will be keeping the high dose cellcept and onward we go on a new pharma drug adventure.
Since I was on prednisone, and it wasn't working I had to get off it, so the tapering began. At first I thought my doctor was nuts. 2 week taper?
Really?
50 mg to nothing in 2 weeks?
And my mind kept going and going on how I was going to blow up again, feel miserable and end up in the hospital for acute renal failure with an IV and 3 bags of solumedrol hooked up to me.
Twice was enough.
Well, I was totally wrong and pleasantly surprised by my lab results after I began my taper. I was also pleasantly surprised by my increase in energy, appetite, vision, mood, overall better feeling. My albumin went up and protein went down.
Whaa?
Yes. I improved! And tapering off prednisone was the only difference I made. It was doing more harm than good. I believe that my liver was stressed and my body was experience steroid toxicity. I guess there is a term for that, I think most people end up experiencing it as it is probably not normal to have that much cortisol in the body for that long.
I am now at 15mg prednisone and ACTH will replace prednisone completely after tomorrow's last dose of 15mg.
So long prednisone. I will not miss you. The mood swings, protruding belly, bulging eyes, thinning hair, the fat cheeks, the acne & pimples, the hairgrowth on my back, forehead, upper lip and jawline. Wow, you really wanted to turn me into a fat, balding prepubescent man. And those are just the vain side effects. I hope the gastritis, anemia, high blood pressure, will go too.
I really hope my own synthesis of cortisol is more kind to me, as I imagine it will be. There is nothing more magical and miraculous than the complexity of human chemicals. I imagine that prednisone can only mimic so much of what real human cortisol can be capable of... at least I hope.
I can always hope for the best.
Wednesday, September 5, 2012
Sunday, August 26, 2012
The Beginning
I'm sure there may be a gray area when this all began itself.
I was working and traveling a lot, amidst investing in a company start up, and the stress levels continued rising. Taking care of myself was not a priority and what I was eating, habits I was making, was making great strides in general misconduct for my health.
My immune system for the past 3.5 years has been totally out of wack to say the least. Four times I got really sick within those years, which is more sick than the total amount of times I've ever been sick in my entire life! Why so sick?
Within those years I got married and moved three times out of three different states, watched my dad wither away and pass from a freak auto-immune disease, and juggled working in a highly competitive industry that demands so much energy from me. And on top of that I moved away from California sunshine to the rainy and gray pacific northwest. I was a California girl, born and raised in the shining sun. Seattle? My friends would say, where the hec is that? Yes. Very Californian. My vitamin D levels surely hit rock bottom by the time I left Seattle and decided to move to Portland, another rainy cloudy city that never sees the sun.
While I was in Portland April 2011, I got this crazy insane lung infection flu thing. Brought on by fatigue, swollen lymphnodes in my neck, and back & neck pain. After the fever, I had difficulty breathing deep breaths; I was lucky enough to experience this for almost 3 weeks. Then once I got better, I was lucky enough to experience one month of normalcy. I was enjoying my health and was hula hooping again! Maybe, just maybe my health was restoring.
Nope, I was completely, totally, utterly wrong.
Late May, my skin started feeling tight in my legs. And I noticed that I was gaining weight everywhere and my eyelids were puffy in the mornings. This is weird, this never has happened to me before.
Well certainly if it came out of the blue like that, it will go out of the blue... just like that....
Eerrr, wrong. It didn't go away. It got worse, really worse. I blew up 20 pounds in a matter of 3 days. I was in total denial at that point and didn't want to go to a doctor. I've never had many health problems, I've always been conservative with my diet and exercise. I had asthma for two years, and when I was 16, I outgrew it.
Well, shame on me, because the denial wouldn't go away. I'm very stubborn, to a fault. I have always been a believer in alternative medicine and I didn't know my limits. But how can you if you've never been really REALLY sick? So, I tried acupuncture and herbs, which helped with the water weight. I had a moment where things looked like they were going in the right directly with no pharmaceuticals, but things definitely made a turn for the worst (hoping this was the worst since I'm still living with it!).
Three months of swelling, three months of hauling 25-40 lbs of water on my 5'1" normally 105lb frame.
It got difficult to breathe at any time of the day, and that was when I knew I had to go to the hospital and get a doctor ASAP. A nephrologist looked at some labs of mine, and I got a call from her medical assistant saying I need to go to the hospital because, "your kidneys are experiencing acute kidney failure, or you're going to lose your kidneys and need dialysis."
They placed an IV in my arm, I got my kidney biopsy at the hospital, and they started me off with day one of three, 500mg IV solumedrol, 4 bottled doses of IV Albumin daily (I had almost 0 albumin in my blood), and because of my fluid overload, I was hit with 80mg of IV lasix twice daily (yes, once at night, thanks guys!) until I left the hospital. I hadn't slept well in three months, boy, did my hospital experience redefine what bad sleep really meant. I lost 34lb by the time I left at the hospital. Little did I know over the months as my albumin began to rise, the swelling was going away slowly on its own and I was greeted in the mirror to find two tiny sticks carrying my bobblehead of a body, 90 lbs I was! Knees weak and granny-fied legs, I pretty much had to relearn how to walk, my center of gravity was so off.
At the hospital, no one knew what was going to happen, no one even knew my diagnosis. All they were watching out for was whether or not my kidneys were going to fail. 2.7 creatinine slowly dropped to 1.7 by the time I left the hospital and I was given 50mg after I finished day three of solumedrol.
My neph came to see me before I was discharged and she wrote on the board, "FSGS" "20%," pointed and explained each scribble briefly. She said that 20% is when I would need to start finding a donor and that "it's good you have two sisters." All I heard when she explained FSGS to me is "it can be put in remission." And honestly that is all that I care about now. Prednisone worked amazingly and immediately. It put me in remission for five months. My side effects were minimal, they all came on really strong the first two weeks and then sorta plateaued, making me look like a round face, hormone raging teen. Thinning hair, acne, *pshaw, compared to kidney failure and not being able to breathe from fluid overload, I was in heaven.
I am now in relapse. Talk about nightmare. Things are so different this round. You know that saying "it could be worse?" well there is a reason why people say that. I was tapering off prednisone, which I once responded so nicely to, despite the obscene amount of protein I was spilling, 41g! Yes, the "interesting patient" that I am, will be receiving ACTH injections since three months of prednisone (in conjunction with cellcept) has shown will not work to put me in remission again.
I am trying everyday to put myself in remission. I know these things take time but boy do I want nothing more than to be healthy again. Keeping my fingers cross... this better work!
I was working and traveling a lot, amidst investing in a company start up, and the stress levels continued rising. Taking care of myself was not a priority and what I was eating, habits I was making, was making great strides in general misconduct for my health.
My immune system for the past 3.5 years has been totally out of wack to say the least. Four times I got really sick within those years, which is more sick than the total amount of times I've ever been sick in my entire life! Why so sick?
Within those years I got married and moved three times out of three different states, watched my dad wither away and pass from a freak auto-immune disease, and juggled working in a highly competitive industry that demands so much energy from me. And on top of that I moved away from California sunshine to the rainy and gray pacific northwest. I was a California girl, born and raised in the shining sun. Seattle? My friends would say, where the hec is that? Yes. Very Californian. My vitamin D levels surely hit rock bottom by the time I left Seattle and decided to move to Portland, another rainy cloudy city that never sees the sun.
While I was in Portland April 2011, I got this crazy insane lung infection flu thing. Brought on by fatigue, swollen lymphnodes in my neck, and back & neck pain. After the fever, I had difficulty breathing deep breaths; I was lucky enough to experience this for almost 3 weeks. Then once I got better, I was lucky enough to experience one month of normalcy. I was enjoying my health and was hula hooping again! Maybe, just maybe my health was restoring.
Nope, I was completely, totally, utterly wrong.
Late May, my skin started feeling tight in my legs. And I noticed that I was gaining weight everywhere and my eyelids were puffy in the mornings. This is weird, this never has happened to me before.
Well certainly if it came out of the blue like that, it will go out of the blue... just like that....
Eerrr, wrong. It didn't go away. It got worse, really worse. I blew up 20 pounds in a matter of 3 days. I was in total denial at that point and didn't want to go to a doctor. I've never had many health problems, I've always been conservative with my diet and exercise. I had asthma for two years, and when I was 16, I outgrew it.
Well, shame on me, because the denial wouldn't go away. I'm very stubborn, to a fault. I have always been a believer in alternative medicine and I didn't know my limits. But how can you if you've never been really REALLY sick? So, I tried acupuncture and herbs, which helped with the water weight. I had a moment where things looked like they were going in the right directly with no pharmaceuticals, but things definitely made a turn for the worst (hoping this was the worst since I'm still living with it!).
Three months of swelling, three months of hauling 25-40 lbs of water on my 5'1" normally 105lb frame.
It got difficult to breathe at any time of the day, and that was when I knew I had to go to the hospital and get a doctor ASAP. A nephrologist looked at some labs of mine, and I got a call from her medical assistant saying I need to go to the hospital because, "your kidneys are experiencing acute kidney failure, or you're going to lose your kidneys and need dialysis."
They placed an IV in my arm, I got my kidney biopsy at the hospital, and they started me off with day one of three, 500mg IV solumedrol, 4 bottled doses of IV Albumin daily (I had almost 0 albumin in my blood), and because of my fluid overload, I was hit with 80mg of IV lasix twice daily (yes, once at night, thanks guys!) until I left the hospital. I hadn't slept well in three months, boy, did my hospital experience redefine what bad sleep really meant. I lost 34lb by the time I left at the hospital. Little did I know over the months as my albumin began to rise, the swelling was going away slowly on its own and I was greeted in the mirror to find two tiny sticks carrying my bobblehead of a body, 90 lbs I was! Knees weak and granny-fied legs, I pretty much had to relearn how to walk, my center of gravity was so off.
At the hospital, no one knew what was going to happen, no one even knew my diagnosis. All they were watching out for was whether or not my kidneys were going to fail. 2.7 creatinine slowly dropped to 1.7 by the time I left the hospital and I was given 50mg after I finished day three of solumedrol.
My neph came to see me before I was discharged and she wrote on the board, "FSGS" "20%," pointed and explained each scribble briefly. She said that 20% is when I would need to start finding a donor and that "it's good you have two sisters." All I heard when she explained FSGS to me is "it can be put in remission." And honestly that is all that I care about now. Prednisone worked amazingly and immediately. It put me in remission for five months. My side effects were minimal, they all came on really strong the first two weeks and then sorta plateaued, making me look like a round face, hormone raging teen. Thinning hair, acne, *pshaw, compared to kidney failure and not being able to breathe from fluid overload, I was in heaven.
I am now in relapse. Talk about nightmare. Things are so different this round. You know that saying "it could be worse?" well there is a reason why people say that. I was tapering off prednisone, which I once responded so nicely to, despite the obscene amount of protein I was spilling, 41g! Yes, the "interesting patient" that I am, will be receiving ACTH injections since three months of prednisone (in conjunction with cellcept) has shown will not work to put me in remission again.
I am trying everyday to put myself in remission. I know these things take time but boy do I want nothing more than to be healthy again. Keeping my fingers cross... this better work!
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