Calcinosis

I think I’ve just developed my first (noticed) blob of calcinosis on my finger - my question is:

What’s the mechanism in the body with scleroderma-related calcinosis?

(I’ve read different causes such as kidney failure, high calcium and phosphorus content in the blood etc - but in our case, what’s the bodily cause?)

[LucyJean]

Hi there, I am going to be interested to see if anyone knows the answer to this question. In all my many years of having scleroderma (with significant amounts of calcinosis), nobody (and this includes all the Rheumatologists I have ever worked with) has been able to give me an answer to this question.

Perhaps Prof Denton would have an opinion...or Ariane Herrick (Prof Rheumatology in Manchester with a special interest in scleroderma) ...or maybe someone in SRUK who looks in on these discussions can comment?!?!

Would be great to know!

All my best

Lucy

[forevermu]

Hi

I also have these hard white spots that come up on my arms so an answer to your question would be great.

[Gmargs]

As Lucyjean mentioned it would be great if more research could be done looking at calcinosis in Scleroderma/autoimmune conditions...

I have calcinosis affecting many areas (joints, fingers, legs, jaw and more). I have done a lot of reading on it and found these sites informative (no answers though).

healthhype.com/calcinosis-c...

rad.washington.edu/about-us...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

bad.org.uk/shared/get-file....

Happy reading 👩🏻‍💻

[Sanmateogirl107]

ask your immune doctor ask for pain specialist as well probiotics, fish oil can help. good luck julie

[LucyJean in reply to Sanmateogirl107]

Hi there, I completely agree that both probiotics and fish oil can have nutritional benefit for everyone and should definitely be part of a healthy diet, but they have absolutely no impact on calcinosis at all I am afraid.

Lucy x

[Sanmateogirl107 in reply to LucyJean]

contact scleroderma foundation to find out more information on line they have great ideas

[victorious21]

I have significant calsinosis. Prof chris Denton says it becomes worse in the latter stages of scleroderma There is no real treatment however at my last clinic appointment with him , a trial showed cycling minocycline daily every three month showed some improvement but only in certain scleroderma patients with the antibody RNA polymerase, which I have . I have this type of antibody so I’ve been following this protocol since the summer

Message me on Instagram for more info if

You wish

Lynn

[LucyJean in reply to victorious21]

Hi Lynn, it will be great to know how you (and others on the trial) get on! I don't have the RNA antibody so I guess this is not one for me, but at least they are working on the issue.

Lucy x

[Hidden in reply to victorious21]

Hits Lynn I’m not sure if I’ve RNA antibody - tbh it’s just one little blob I’ve got so far. Definitely will be interested in your progress, I need my rheumatologist to email me back really...

[laucar1 in reply to victorious21]

I have calcification of both shoulders and one hip. I tried Minocycline but unfortunately it damaged my gut so severely that I ended up being extremely ill, apparently if you have reflux then it can travel back up with the acid and damage the lining of your gut, nobody told me to take it first thing in the morning to avoid this. I have just had surgery on one shoulder this week and if this is successful they will remove the calcification on the other shoulder in a few weeks. They are less keen to tackle the hip as it is a more complicated surgery. The surgeon said surgery is generally very successful but that is in normal people, he seemed to know very little about long term outcomes for people with scleroderma and whether it would return.

[Hidden]

Thanks everyone. I wasn’t so much looking for a supplement type resolution as understanding the biochemistry behind it at this stage. If I find anything out I’ll report back PS GP was baffled hehe

[NZHeather]

My thoughts on how calcinosis is formed. I have been pondering this and my thinking is.

We have scleroderma, which is a connective tissue disease.

When we damage the connections between our tissues, usually in the places that take the most stress – thumbs, fingers, elbows, knees etc. our bodies rush a ‘mix’ to repair that damage.

When the usual person damages their connections their ‘mix’ of good healing stuff which includes say 25% collagen rushes to the damage. It heals without them even knowing.

BUT

We with scleroderma our ‘mix’ could consist of 50% good stuff and 50% collagen. Which takes a lot more ‘mix’ to heal the damage and we are left with a ‘blob’ of collagen. Our bodies do not see this as an invader such as a thorn, so it sits there and hardens. This ‘blob’ then inflames the tissue around it causing more damage and more ‘blobs’.

The only way then perhaps to stop calcinosis is perhaps stop using our thumbs etc…ha an impossible idea, or we could find a way to stop the excess of collagen.

Calcinosis is an unfortunate label as it appears to be calcium based, but it is just hard collagen ‘blobs’.

I would appreciate your comments Thanks Heather

[Jackiecatlady in reply to NZHeather]

Sorry I should have sent you a reply and I've sent it to the bear by accident oopps

[Jackiecatlady]

Thank you . I have a blob as you call it . Doctor said it was nothing . I thought calcinosis would be hard and brittle . But as you say it's more a blob of fleshy stuff under the skin . I have scleroderma and Raynaud's and rheumatoid arthritis . Diagnosed three years ago now . I'm doing ok bon methotrexate , amlodopine . Do you know if scleroderma affects memory loss as I'm getting very forgetful . I am a fairly fit 63 year old . Thanks in anticipation

[Hidden]

I’m not sure about memory I don’t think I’ve heard mention of it, but I have a terrible memory! If you’re concerned, talk to your doctor. Could just be normal aging?

[vesna37 in reply to Hidden]

Me too.i remind myself on Dory from Nemo cartoon.Forget what I planned to say and do insantly..also i can not concentrate..not sure how Ssc can affect cognitive and brain functions but I will check with doctor on saturday and (hopefully remeber to)let you know

[Hidden]

Summary Calcinosis cutis is the deposition of insoluble calcium in the skin and subcutaneous tissues. It represents a major clinical problem in patients with SSc affecting at least one quarter of patients. It is associated with longer disease duration, digital ulcers, acro-osteolysis, positive anticentromere antibody, and positive anti-PM/Scl antibody. Although pathogenesis is unknown, there is evidence supporting local trauma, chronic inflammation, vascular hypoxia, and dysregulation of bone matrix proteins as potential mechanisms. Diagnosis can be made clinically or with plain radiography. Several pharmacologic therapies have been tried for calcinosis with variable and modest results, but surgical excision of calcium deposits remains the mainstay of treatment.

Looks like the actual pathology is only theorised

[newton in reply to Hidden]

I found this really interesting. I have had for several years a very small lump on my knee. Early last year the area became to painful to kneel on, months later the whole knee area swelled up. Antibiotics sorted out the swelling but then discharge started coming out from the centre of the small lump. Nothing was done except backwards and forwards to have it cleaned and redressed. Eventually it was x rayed. 3 months for the results. During that time hard white lumps of what I think must be a form of calcium/phosphate have been emerging from the area. They look like small lumps of limestone and I have been collecting them in a sample tube so I can show doctor/consultant. The x ray showed a foreign body in the soft tissue. I saw a consultant in September who has diagnosed a bursa but I think it is more likely calcinosis cutis. I am due to have surgery on Tuesday. Would one get deposits like this with a bursa?