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Calcinosis from scleroderma


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#1 cillam888

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Posted 18 October 2013 - 03:08 PM

I am a 25 year old female who has been living with limited Scleroderma as a secondary disease to dermatomyositis for the past 5 years. Three years ago I began developing calcinosis (calcium deposits on both elbows and knees) the build-up has been fairly painless. But a few months ago, I made the mistake of listening to my ob/gyn and took extra calcium during the end of my second pregnancy. He claimed it would not affect the calcinosis, but it did quite extensively. The deposits practically tripled in size over a course of 2 months. Again, the build-up did not cause too much pain. However, about 2 months after I delivered my daughter, both knees and both elbows began swelling horribly and began leaking calcium through the skin, my knees have literally gotten to be the size of a large grapefruit. I have had the leaking before, but never the swelling. The first time I went to the ER, it was diagnosed as infection. I was given a course of IV and oral antibiotics as well as IV and oral steroids for the inflammation. However the treatment was ineffective, the swelling and pain continued for weeks. My rheumatologist ordered an MRI and X-rays, all of which came back normal (except for the calcium deposits). A couple days later I saw my primary care physician, who insists it is merely pain associated with Scleroderma from the tightness of my skin, but the skin tightness in my body is limited to my forearms, hands, and feet, and I have never experienced this sort of pain in those areas. The pain eventually began to subside for a few days, but then came right back, just as strong as ever...so back to the ER I went. They diagnosed me with pseudogout, which my rheumatologist immediately dismissed due to my young age. She did an ultrasound on my knee joint which showed no fluid, and gave me more antibiotics to be on the safe side. That was two months ago, the pain and swelling still continued, so then I had blood drawn to check for infection, as well as a culture of the fluid leaking from my knees, they both came back negative. It has now been a total of 3 months since this all began...I am at a total loss on what to do. The pain is unbearable, it is to the point where I can barely walk or lift my children. I am wondering if this could possibly be my body breaking down the deposits and reabsorbing the calcium. I have noticed that the deposits on my elbows have shrunk quite a bit, I still can't tell a difference in my knees. I have not been able to find any information on the resorption of calcium deposits. If anyone knows anything about it or has had a similar experience, I would be so grateful to hear about it.

#2 Joelf

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Posted 19 October 2013 - 10:34 PM

Hi Cillam,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering such horrible symptoms from Calcinosis. Thankfully, I've not had to deal with this myself, but I can understand how painful and debilitating it must be.

 

I've included a link to our page on Bone Resorption and also an article Erosive Arthropathy in systemic sclerosis to give you some more information. I've also found a couple of previous threads 'Large Masses of Calcinoisis' and 'Calcinosis' which I hope will be of interest to you.

 

Are you being treated by a Scleroderma expert? We do recommend that, if possible, our members consult a specialist, as Scleroderma is such an unusual and complex disease. Perhaps you could arrange an appointment with your rheumatologist and see whether she can suggest any further treatment, to improve things for you as the antibiotics don't seem to have helped.

 

I do hope that you can soon find relief from the pain you're experiencing.

 

Kind regards,


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#3 Amanda Thorpe

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Posted 20 October 2013 - 03:58 PM

Hello Cillam

 

Welcome to the forums. Jo has given you excellent resources, I just wanted to say that it's a myth that calcium in our diet which includes calcium supplements, have anything to do with calcinosis. Calcinosis is nothing to do with the calcium we injest in our diet so don't worry about the extra calcium you had, in no way has it contributed to the problems you are having now.

 

Are you under the care of pain management! If you are having that much pain and the cause is not likely to go anytime soon then you need to have help managing it, have a look at our pain management video.

 

Take care and keep posting.


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#4 Jessiere88

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Posted 07 November 2013 - 02:40 AM

Hi Cillam,

 

I am also 25 and have had systemic scleroderma since I was 13. For a number of years now I've had calcifications, mostly on my knees where I have quite a lot. It has been a rather frustrating journey with them. I have seen specialists, surgeons and been hospitalized with infections because of them. Eventually I found a general practitioner who removes them for me each time they break through the skin, as our experience has been that they will not heal until they are removed. We try hard to not cut them out until they physically break the skin though because we are careful to not add too much scar tissue to my already very tight skin. The only time I have had much swelling is when an infection has gotten through one of the openings made by the calcifications breaking through. I know you have already been on antibiotics, but it may be that there is still a break in the skin which would be constantly open to infection. Finding a doctor that would remove the calcifications was a mission but he's been so worth the search. Perhaps finding a doctor that will remove yours may be helpful. Good Luck. Jess x



#5 Joelf

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Posted 07 November 2013 - 08:58 AM

Hi Jess,

 

Welcome to these forums!

 

Sorry to hear that you've been battling with Scleroderma for so many years and have had such unpleasant calcifications to deal with. I'm really pleased that you've found a doctor who can help with the problem satisfactorily for you.

 

Please do keep posting and let us know how you're faring.

 

Kind regards,


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#6 Amanda Thorpe

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Posted 07 November 2013 - 07:51 PM

Hello Jess

 

Welcome to the forums and I am sorry you have been struggling with calcinosis so long. As you demonstrate there is no cure for it or even treatment for it, you just have to find your own way of managing it.

 

I hope you'll share more of your story, I will have had systemic scleroderma for 7 years next year and it's been a trying journey for sure and it's always good to hear from someone who has been living with is successfully so long.

 

Take care.


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#7 Jessiere88

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Posted 09 November 2013 - 01:21 AM

Hi everyone,

 

Thank you so much for your welcome. A bit about me:

I was diagnosed with Mixed Connective Tissue Disorder/ CREST (Rheumatologists still like to debate my actual diagnosis, as some believe I have too much skin involvement to be CREST while others say I have every symptom of CREST, so it's CREST) with Juvenile arthritis, Scleroderma and Polymyosiits when I was 15, 2 years after getting sick. I also have Raynaud's as a symptom. I have some internal involvement but so far my lungs and heart have remained untouched, which I am very grateful for. I do, however have restrictive lung disease caused by my skin tightening making my ribs cave in. Due to this I have had 45% lung function for about 5 years.

 

Last October I got pneumonia and because of my lung restrictions found myself in ICU on a ventilator where I stayed for months. In the end I spent 6 months in hospital.  Before I went into hospital I was studying teaching full time at Uni. I had a year left. The specialists in hospital told me I wouldn't make it out, which, thankfully I did but I now have a tracheotomy tube. I have oxygen at home, and have learned how to suction myself. I have started making hair clips, which I am selling and I am really enjoying that, but I would love to get back to study. I really wanted to work with disabled children, and I am starting to wonder if there is another way I could do that rather than finishing my degree as I don't think I would be up to that in the near future. So that's me.. looking forward to learning about you all. Jess xx



#8 Amanda Thorpe

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Posted 09 November 2013 - 12:57 PM

Hello Jess

 

That amount of time in hospital makes me shudder! Glad it's over for you!

 

I have only heard of a few people who have had that sort of trouble because of tight skin, I mean things like breathing. My dear friend used to be bent over because the tight skin on her abdomen was pulling her forward. We forget how difficult just skin involvement can make our lives, when diagnosed and given ill health retirement I only had skin involvement, major involvement at that so my mobility was severely restricted. As it softened (not all of it) I thought things were on the up but unfortunately I developed internal involvement, then ulcers, then...

 

Skin involvement doesn't just cause mobility difficulties for sure!

 

I hope that you are able to achieve your ambitions, keep going, just remember to pace yourself and it's not about how much you do but what you do. It does not take a lot to have a positive impact on someone else.

 

Take care.


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#9 Joelf

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Posted 09 November 2013 - 01:47 PM

Hi Jess,

 

I'm sorry that you've had to spend so much time in hospital and have been so poorly. Thankfully, I have minimal skin involvement (merely the tips of my fingers) although I have suffered with lung involvement; however, after some intensive treatment with Cyclophosphamide, my lung function improved dramatically and I consider myself to have been very fortunate.

 

You sound as if you have a very positive attitude, which I do think helps a lot and I really hope you can achieve everything you would like to do.

 

Kind regards,


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#10 Jessiere88

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Posted 10 November 2013 - 03:29 AM

Thanks for sharing your stories with me. I know what you mean Amanda. I am always amazed at the many ways scleroderma can affect someone's body. I am looking forward to sharing experiences on here. I have also decided to start a face to face support group for chronically ill young people in my area, as there is nothing like that here. I am hoping to get the assistance of a former ICU liaison nurse I got to know well when I was in there and was made redundant just after I left. Talk soon

Jess xx



#11 miocean

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Posted 12 November 2013 - 07:14 PM

Jess,

I think it is wonderful that you are going to start a support group for young people! You will have to keep us posted on how it goes.

 

Thanks for the advice on the calcinosis. I have it really badly on my buttocks. It hurts to sit. They are increasing in size and area but have never opened or leaked.The scleroderma specialist tells me I can have them surgically removed but they cover a very large area. My immune system is suppressed due to a kidney transplant so I am concerned about infection and healing and put up with the discomfort. I feel  like I sit on rocks and now at the end of the day when I lie in bad they even hurt from all the pressure throughout the day. Based on your experience I think I am wise to wait until they break open.

 

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