Rituximab and Systemic Sclerosis

[Eden1234]

Hi, just wondered if anyone has large calcium deposits ( I have one approx 9 x 6x 5 cm) associated with systemic sclerosis and been given rituximab infusions to help reduce? If so, how were you afterwards and any success with the treatment?

[irishponies]

Hi, I wish I could help. I start rituximab on Wed. I do have systemic scleroderma and severe Raynauds. I'm listening...

[Eden1234 in reply to irishponies]

I really wish you well. Do you mind me asking why they offered you the treatment?

[irishponies in reply to Eden1234]

Hi! Ask away! Diagnoses: ANCA-associated vasculitis; systemic scleroderma, Raynaud's in feet, calves; Schamberg disease - they are all August 2021 - Hashimotos; more. And you?

[Eden1234 in reply to irishponies]

Really sorry to hear all that’s going on for you, seems as though you have a lot to deal with.I have diffuse systemic sclerosis and secondary raynauds, diagnosed 2011. Calcinosis in fingers been troublesome since 2011 causing problematic ulcers. In 2020 larger calcium deposits started to appear under arms, neck and in shoulders causing limited movement and very visible large lumps (a few 9 cm long approx). This apparently is very rare and can happen later on in the disease. I was offered Rituximab after 1st line treatment Minocycline, didn’t make any difference. To date, I don’t know or have heard of anyone else with this extent of calcinosis involvement which is good as don’t wish this on anyone but means I feel quite alone with it, with no one to compare things with or discuss. If anyone else reads this and is experiencing this stage of calcinosis, i would really appreciate them posting 😊

[irishponies in reply to Eden1234]

Hi, I will always listen. I may need a day or two to respond but I will respond to you. Stay strong.

[Timetolive in reply to Eden1234]

Hi, ive been recently diagnosed with systemic sclerosis and raynards, i have had this for 9 years or more but nobody picked it up. I have a calcium lump the size of an egg on my neck, small lump on knee one on finger and an open weeping lump on arm near elbow, they dont seem to be too worried about them.i have one on my side of foot which i struggle to do much walking, or get nice shoes to fit.