My bone pain is getting worse. It is now in the shoulders and fingers as well apart from my back, ribs and feet. I was surprised with the difficulty I had in climbing down a flight of steps during the last couple of days. It was really terrible. I had to climb down one step at a time by resting both my feet on each step. If I did one step with each foot like any normal person, I had pain in my feet.
This bone pain has become my most significant problem. The worst part is I am not currently doing anything to address it. The pain is most likely due to the low Calcium dialysate I erroneously used for months due to which, I suspect, Calcium was being leeched from my bones. I corrected this in the last week of January. I switched to a slightly more-than-normal Calcium. Due to this, however, my PTH plummeted to about 5 which is very, very low. The normal PTH for people without kidney disease is between 7 and 53 pg/ml. For people on dialysis, the PTH should be between 250 and 500 pg/ml. Mine was 5 pg/ml.
When I was on the low Calcium dialysate, my PTH had touched 1000pg/ml! The moment I corrected the Calcium, the PTH fell to 5. This can be dangerous in other ways. It can cause something called Adynamic Bone Disease which is equally harmful. So, I had to reduce my Calcium in the dialysate immediately. What did this mean?
I wasn't doing anything to put back the Calcium into my bones! That's how it is even today.
My Phosphorus continues to be low despite me taking a ton of Phosphate supplements and gorging on dairy products.
So, I was beginning to panic. I posted a question about this to Dr. John Agar, the expert on nocturnal from Australia. When I had figured out the reason for the pain, Dr. Agar had warned that the changes that had happened might just be permanent. I had hoped he was wrong. So, the questions I asked him were, "Is this bone pain likely to last long?" and "Is there anything at all that can be done about it?".
Dr. Agar responded that a bone biopsy would be the way to go. It would tell us what exactly the problem is. My nephrologist, Dr. Girish Narayen, had talked about a bone biopsy a few weeks back. The problem was it is not done in Hyderabad, the city where I live. I would need to go somewhere else to get it done. They first give you an injection of tetracycline and after three weeks, give another shot and then do the biopsy.
I am planning to discuss this with Dr. Girish Narayen soon.