This was a full week filled with work, training and hope! So lets break it down….
Training has been going well. As I said, I am not going to do every run as a run, but I am doing my training. I also am trying to be proactive and went totally the podiatrist to get a new pair of orthotics. I have suffered with plantar fasciitis in the pst, so I am trying to get ahead of it. This is also one of the reasons that i am not doing all my training as running. There is a benefit to it.
I was surprised that when I went to the podiatrist he told me that the last time I got orthotics was in 2017. I knew it had been a while, but that is definitely too long for feet like mine. I am also trying to make sure to do some daily exercises and stretches. I really want to do all i can not to deal with the pain of plantar faciatis. Fingers crossed.
As for the hope……..
This week TransCon PTH was approved by the FDA!!!!!!!!!!!!!!!! This is now the first hormone replacement therapy approved for those of us with Hypopara. I am excited because I remember how I felt when I was taking Natpara (another therapy that was pulled). That being said, I also know getting on it will be a whole other hurdle.
When I was on Natpara it required special approval because it was not FDA approved. It also was extremely expensive. It didn’t cost me anything because it was all covered by Shire (the company) seeking approval. The cost was nothing to sneeze at since it was over $10 THOUSAND dollars a month. So there’s that, but I haven’t heard the cost of TransCon yet.
I am hopeful that even if it has a high cost that I would still qualify but I’m not sure cost wise if it will be affordable. Fingers crossed. I think that I would qualify since I am slowly damaging my kidneys with my high urine calcium levels. I check my levels every 6 months. My last 24 hour urine level was 560 even though I take “low” doses of calcium and calcitriol. My levels are usually over 350, but I’ve been over 500 a few times. For those unsure what this means, for someone without Hypopara a high level is anything over 250. They give some leeway for those of us with it, but anything over 300 is considered high….. So go me:)
These high levels are the reason I have said that I am trying not to add calcium into my training but work in the constrains of what I normally take. I may adjust when I take, but I really am trying not to add more unless it is necessary to keep my serum calcium levels in check.
Balance…
Balance…
Balance…..
So looking forward to the day that I can take an injection of PTH daily and then let my body do what it is supposed to do. Until then….
Here we are:)
Are you planning to get in line to get on TransCon?










