Tofacitinib for Calcinosis

[Eden1234]

Hi, just wondered if anyone has tried Tofacitinib for calcinosis? I have posted before re very large calcium deposits but it seems quite rare to have the large deposits I have 🥴

[Clangerscat]

Hi Eden I’m guessing you’re right about how rare it is to have large deposits and that’s why you don’t have any replies yet. I have had one on my thumb for years that seems to get bigger and then die down on a regular basis but it’s never given me any real problems. Sorry I can’t help, hope someone will be able to answer your question.

[johncot in reply to Clangerscat]

HiI suffer with very large calcium deposits around my hips. I was told a year ago that I would be referred to a surgeon to have them removed but I'm still waiting. I will ask my rheumatologist about tofacinitib. Thanks for your post

Good luck

[Eden1234 in reply to johncot]

Hi, thanks for both replies and sorry for you suffering with this.

I had a large deposit 10cm x 6cm ish in my neck surgically removed in March. Surgeon said he hadn’t come across this before (surgeon in his 50’s) and was unsure until he opened up area how he was going to proceed. There was a lot of meetings with him and his colleagues to discuss and agree or not to go ahead. However , Surgeon said after op that calcinosis was widespread in that area and basically it was going into every nook and cranny… bit like honey comb he said. He was unsure if disturbing and removing would trigger a response to produce more or not. He said he couldn’t take it all out as too dangerous to do so. Currently I wouldn’t t say there is more but unfortunately caused a lot of scar tissue which has caused severe nerve pain and mobility of neck. Cosmetically however, looks better than was.

Tofacitinub has been offered but no real evidence of it working so very anxious about trying it. I have also had large deposits on underside of both arms… again 9-10 cm long x cms wide but thankfully have ‘burst’ on their own.

I have very bad calcinosis in fingers and up right arm. I regularly get finger and thumb ulcers and eventually ‘stones’ of calcium which I pick out. All just horrible and terribly painful.

Feel for all yous suffering with this disease 😞