Calciphylaxis

[NurseRed]

I have been on dialysis for 4 years.i have devoloped knots under my skin on legs arms breasts etc.i have been diagnosed with calciphylaxis i have no open wounds thank God. I know very little about this diagnosis do any of you know any information.?

[Bassetmommer]

HI NurseRed,

I looked it up ( Google) says it can be cause by multiple things. Just a couple of quesions....are they monitoring your PTH and are you on any meds to lower or balance that. Your condition is often caused by an imbalance of calcium due to hyperthyroidism. There is plenty of information out there on this. So sorry you have to fight this on top of dialysis. Take care of yourself. Sending good wishes.

[KidneyCoach NKF Ambassador in reply to Bassetmommer]

Hyperparathyroidism. @ nurse red, Binders are essential. What are they doing to treat it? Are you asking questions?

[Erifre]

Hi NurseRed, I’m sorry you have been recently diagnosed with this condition. Just like Bassetmommer and KidneyCoach me tioned, have you checked with your Nephrologist your Phosphorus and PTH levels?, to get this condition they must be very high, talk about your binders (Sevelamer, Auryxia or the one that you are taking now), if the binders you are taking don’t make your phosphorus levels go down, try a combination, but talk to your doctor and to your renal dietitian. There’s also a medication called Cinacalcet (Sensipar) that helps a lot with your phosphorus and PTH levels, if your phosphorus is high, your PTH will be high as well. Remember phosphorus comes in every single food we put in our mouths. Stay away from baked products (pastries), dairy, processed foods, and fast foods. I hope this tip can help you, I’m sending you my best wishes and good vibes! Stay positive, you can control this.