Tofacitinib

[Eden1234]

Hi,

I’ve posted on here a few times about large areas of calcinosis ( I have diffuse systemic sclerosis) but as it’s a rare side of dSSc I have had very little response regarding others having this . My consultant did say mine (large deposits ) was very bad and hadn’t seen it as bad before which is very concerning for me. If anyone has these large deposits I would really appreciate hearing from them. Just 3 weeks ago I had a large deposit partially removed from my neck leaving a 5” scar down front side of neck ! The ENT surgeon said in his decades of operating, he had never seen this before and was going into the unknown which was rather scary for me. Once op was done he described the mass as ‘putty’ like but was unable to remove it all as it was honeycomb like and said it was too dangerous to ‘dig’ out from the little spaces so operation was more of a debridement.

I have been offered Tofacitinib (not licensed for SSc) to possibly help reduce/stop the calcinosis but very unsure of the side effects as not strong enough evidence of this meds working but after trying other things, this is the next option. Thanks in advance for any help 😊

[LadyTrundle]

gosh that sounds awful! I thought the lumps on my fingers were bad but they’re tiny compared to that.

The team at Royal Free have recently suggested Minocycline to debulk mine I haven’t yet tried it though until after my holiday and then I’m not sure … it’s an old antibiotic that used to be used for acne but has been stopped because of possible damage to the liver

A medical friend looked it up and said ‘There are some reputable sites , American and recent, which say it can help.

Why does it help? Calcium binding properties, anti inflammatory and “inhibition of matrix metalloproteinases” (whatever they are) are cited.’

I’m told I would have it for 3 months then stop - and only if really necessary another 3 months some time later.

Like you, I’d be interested to hear if anyone else had had this for calcinosis.

[Eden1234 in reply to LadyTrundle]

Hi Lady Trundle

Thanks for your reply. I too have the calcinosis in the hands and yes they are awful 😖

The good thing with the big areas are they aren’t really sore but have had reduced movement in neck. Apparently the calcinosis is widespread (honeycomb like) in my neck but only on one side so far has it been very visible. I have tried the minocycline but unfortunately didn’t work for me. Also same method of taking it as you have been instructed to. Really, really Hope it helps you though 🤞 I also had an attempt at Rituximab but took an allergic reaction to it 1 hr into 6 hr infusion!. Anything they offer now is a case of, there is not much evidence of this working and is not licensed for your condition but if we get approval for it, you can give it a go ! Not really what I want to hear when things are not great. Really hate this disease 😢

[LadyTrundle in reply to Eden1234]

So sorry to hear that the other things haven't worked for you. But maybe this on will - after all, that's how they figure out that certain drugs can work for other conditions. Fingers firmly crossed for you.

[Eden1234 in reply to LadyTrundle]

Thanks. Very much trial and error with drugs. Still haven’t decided to go ahead with Tofacitinib as yet 🥴

Really sorry to hear about all your issues. The disease that just keeps giving!

[Timetolive]

Hi, I had a large deposit on my arm after 3 years got so painful plastic surgeon removed it which left a large hole they were going to put skin graft to cover but left open.i also have lump on knee but left that as they didn't knock me out the first time and was traumatic. I'm on sildenafil at moment.

[Eden1234 in reply to Timetolive]

Hi Timetolive

Sorry to hear how bad all that was for you. No wonder it was traumatic! Could u ask to be put to sleep for the lump on your knee?

I have also had large lumps on under arms and also down side of back but very luckily they all came to a head and the calcinosis burst through the skin on it’s own without intervention. One lump has refilled but not offering to burst through yet. Have you been offered or tried any medication for the large lumps?

[Timetolive in reply to Eden1234]

Been on sidnafil ,viagra, for calcium lumps but don't think its working. Asked to be put out but said no as you are in and out within few hours. So get through more patients. Hope all goes well for you.

[Eden1234 in reply to Timetolive]

I too have been on sildenifil for many years but I was told it was to increase circulation in fingers. It was never mentioned to me about helping with the calcinosis which is very bad in my fingers also. I got a pacemaker back in August and said I was not having it done unless put to sleep. I had my reasons for that decision. Thankfully they listened and respected why and I was put to sleep for the procedure. You had a traumatic experience and should have been listened to. Sounds awful what you went through. Thank you for your kind wishes and same back to you 😊