Ok, so if you've been following my bone pain thread, you know I figured out that my bone pain was due to the low Calcium dialysate I was using in error. And that the Calcium was being pulled out from my bones continuously over the last few months.
I switched to regular Calcium dialysate (3 mEq/l) last Thursday. And I used a high Calcium dialysate (3.5 mEq/l) on Tuesday and Wednesday. I have also doubled my dose of Calcitriol to 0.5 mcg/day. All this without my nephrologist catching a whiff of what I was doing! Now, don't get me wrong. He's a very nice person (and if it wasn't for him I would not be living today because he suggested nocturnal daily home hemo to me). The only problem is he is a little less aggressive, imho. He would rather let the symptoms of bone pain go away slowly than try something aggressive and risk extraosseous calcification (calcification of the arteries and veins due to excessive calcium in the blood - turning to stone in common parlance).
So, I am trying this experiment myself - with only friends on the internet (including one very helpful nephrologist from Australia) to guide me. Risky? Yes. Can I help it? No.
So, a whole lot of Calcium was being added to my blood, especially over the last couple of days. Because of this, there is some good news and some bad news. The bad news first - my Calcium has skyrocketed to a whopping - hold your breath - 13 mg/dl!!! Normal is 8.5 to 10.1 mg/dl. I remember my nephrologist go ballistic when my Calcium had become 11.5 mg/dl a couple of years back. He almost threw a fit and broke into a sweat and had me off anything that even remotely looked like Calcium! In fact that is when the whole 'low Calcium saga' started (I'm sure you know about this unless you have joined the party late).
Coming to the good news - my bone pain is getting - hold your breath again - better. Yes, you read that right. BETTER! Which is difficult to believe. I had thought I would have to go through life with this pain. I had started thinking about the deeper meaning of life (can you believe it?). I even wrote depressing posts about life expectancy and what have you!!!
Before you get carried away - its not gone. Its got about 10-15% better, that's all. But that is big. The pain was increasing with time. At least now the reversal has started!
Which brings me to the dilemma I am faced with currently. Should I continue the high Calcium dialysate, try to get rid of the bone pain real quick and risk a high calcium and extraosseous calcification or switch to a regular (not low) Calcium dialysate and hope that the bone pain resolves slowly?
Not a nice dilemma to have!