Are there any other individuals here with HFTC, GALNT3 mutations, or experience using IL-1 inhibitors (Anakinra / Canakinumab) for rare autoinflammatory calcification disorders?

Hey everyone,

I wanted to reach out and see if there’s anyone else living with Hyperphosphatemic Familial Tumoral Calcinosis (HFTC / GALNT3 mutation) or currently taking Anakinra (Kineret) or Canakinumab (Ilaris).
Since it’s such a rare condition, it can feel a bit isolating, so I’d love to connect, share experiences, and see how others are navigating daily life with it!

A quick recap of where I’m at:

Diagnosis: I’ve been dealing with severe bone pain since I was 3 years old. Later on, a genetic test confirmed the GALNT3 mutation causing the severe calcifications and pain.

Past Treatments: Previously, we basically focused purely on a low-phosphate diet and phosphate binders. Up until now, my doctors assumed that nothing could really be done about the underlying inflammation itself.
Using targeted agents like Anakinra (Kineret) or Canakinumab (Ilaris) to directly address the inflammatory response is a completely new approach for me.

Current Treatment Strategy: We are currently looking at starting treatment with Anakinra (Kineret). Since both options are (Canakinumab & Anakinra) are off-label medications for my condition and there are no clinical trials for it yet, health insurance won't cover it right now. Also, Anakinra is more cost-effective, which is why they require me to try that first to see if the treatment works at all.

On one hand, I'm genuinely glad there's finally a new medical path to explore, but on the other, I simply lack any personal experience in this area.

Right now, I’m particularly curious about:

1. Is anyone else here dealing with HFTC or a GALNT3 mutation?
2. Has anyone tried Anakinra or Canakinumab for this condition (or similar calcification/inflammatory issues), and how has your experience been?
3. How do you manage severe pain flare-ups on a daily basis?

Thanks so much for reading! Even if you don't have the exact same mutation, I’d really appreciate hearing from anyone dealing with calcification disorders or navigating these types of biologic treatments.