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Large masses of calcinosis


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#1 splaty

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Posted 14 August 2011 - 01:31 PM

Hi, I'm coming to this forum in desperation.

I don't have scleroderma, I have juvenile dermatomyositis. I was diagnosed when I was 9 and am now 17 and although I am in remission I have large masses of calcinosis on almost all my joints - both elbows, knees, hips, tailbone, buttocks. My right elbow, and hips, and the mass on my buttocks are the most painful and I am at the end of my rope. I'm on colchicine in an attempt to help with inflammation but I still have flare ups where my calcinosis leaks and gets inflamed and puts me in unbearable pain.

My rheumatologist is completely clueless as he has not seen calcinosis this bad before. I think my only option left is surgery, so I'm asking if anyone else has had surgery to remove large (and I mean very large) calcinosis masses? How many surgeries did it take and did the calcinosis come back?

#2 Shelley Ensz

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Posted 14 August 2011 - 03:50 PM

Hi Splaty,

Welcome to Sclero Forums! I'm glad you found us, especially since we also cover topics of dermatomyositis and calcinosis.

I would strongly suggest you get a second opinion, and keep on getting second opinions if necessary until you find some help and relief. It's not going to help you to keep on doing nothing about the calcinosis because obviously that approach just is not working for you. See this link, Forum Thread on Calcinosisplus you can alsosearch the forum calcinosis threads, too.

Here's a big welcoming hug -- but gentle enough to not dsturb the calcinosis.
:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#3 splaty

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Posted 14 August 2011 - 08:25 PM

I've done research and other than surgery, which doesn't have great results and can be dangerous are different drugs. I've read in a few places that intravenous pamidronate drastically helped people with calcinosis?Diltiazem has also helped. I also read of someone taking Alendronate to help treat their calcinosis. Has anyone here been on any of those for their calcinosis, and has it helped?

#4 Joelf

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Posted 15 August 2011 - 01:04 AM

Hi Splaty,

Welcome to these forums!

I'm very sorry to hear that you're suffering so much pain and discomfort with Calcinosis. I'm afraid I can't advise you about this from my own experience, but I do know that quite a few of our members are dealing with the problem and I expect they'll be along to give you some first hand advice.

Actually I do take Alendronic Acid, but that's to prevent Osteoporosis as I have to take steroids and therefore it isn't used in the same context as you've described. However, I've included links to Pamidronate, Diliazem and Alendrate which I hope will give you some more information.

Here's a welcoming :emoticons-group-hug: from me as well.

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#5 splaty

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Posted 17 August 2011 - 01:03 PM

Does anyone have any other input?

Thanks.

#6 Jeannie McClelland

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Posted 17 August 2011 - 01:53 PM

Hi Splaty,

I can't speak from personal experience either. We do have a number of members with calcinosis, so be patient and I'm sure when one of them logs on, they'll be glad to share their experiences. In the meantime, welcome to the forum. I hope you'll continue to post and let us know what treatment(s) you may try and your experience with them. I know you'd rather not be a ground-breaker, but I think you will get valuable info to share.

Warm hugs,
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#7 miocean

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Posted 17 August 2011 - 09:25 PM

Hi Splaty,

I have really bad calcinosis on my buttocks that is very uncomfortable and at times painful. I have been fortunate as they have not ulcerated or leaked. I can't imagine what you are going through with so many areas of your body affected. I was told by my scleroderma specialist the only option was surgery. At the time I was waiting for a kidney transplant so surgery was not an option. I received the kidney over a year ago but have not had surgery. My calcinosis is spread over a large area and what I would have to go through and my weakened immune system from my anti-rejection medications makes it very risky.

I have been told to keep the area dry and that they go much deeper than they look. I put up with it by sitting on pillows but know of no medicine that makes them go away and even surgery isn't a proven cure. I wish I had the magic answer for you but I don't.

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#8 splaty

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Posted 18 August 2011 - 12:34 PM

mioocean, I have the same problem. Often times it is uncomfortable to sit down, a small spot on my buttocks has ulcerated and does leak. It's just horrible. My hips bother me the most, and often times when more of it breaks through the skin I can't walk. I'm given pain medication to deal with my pain but I don't want to be on those for the rest of my life. The colchicine doesn't seem to be having much affect. My rheumatologist didn't want to put me on a calcium channel blocker like diltiazem because I'm so young and it could affect my growth and development, but at this point I'm desperate and willing to try anything despite the other side affects.

I did some research online and found some experimental trials that make me hopeful - but I also know not to get too hopeful.

1) http://www.ncbi.nlm....pubmed/20031471 (Complete resolution of universal calcinosis in a patient with juvenile dermatomyositis using pamidronate.)
2) http://www.ncbi.nlm....pubmed/20031471 (Complete resolution of universal calcinosis in a patient with juvenile dermatomyositis using pamidronate.)
3) http://www.ncbi.nlm....pubmed/20346254 (Effectiveness of the treatment with intravenous pamidronate in calcinosis in juvenile dermatomyositis.)

That last one seems very promising that 3 people showed improvement. I also found several older PubMed abstracts about diltiazem for calcinosis. So I'm going to talk to my rheumatologist about trying the pamidronate in combination with diltiazem.

#9 Sweet

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Posted 18 August 2011 - 05:40 PM

Hi Splaty,
I don't have any great words of wisdom, but I wanted to welcome you as well, and to let you know I'm sorry you're dealing with this.
Warm and gentle hugs,

Pamela
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#10 splaty

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Posted 19 August 2011 - 07:10 PM

Thank you, Sweet. I called a specialist today at the Myositis clinic at George Washington University. I was told that she is an expert in calcinosis because she has dealt with it a lot. If I have any luck with her I will definitely post her contact information. I hope to find a way up there and maybe have a visit with her.

#11 lavenderrose

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Posted 06 July 2012 - 12:21 AM

Hi splatly,

I'm new to this forum, although I've had Scleroderma for 12 years, and just found this site. I am so sorry that you have to deal with such severe calcinosis, as well as the others that have contributed to this thread.

I do have large areas of soft tissue calcifications, as well as small ones...found in all different areas. It's from a small spot in the bridge of my nose to large areas in both arms, right hand, pelvic area down one thigh (mostly only seen in an x-ray), small areas in both hips, near the spine, etc. So far I've had 4 surgeries on my left arm and 2 on my right hand. Sadly, there is no way to remove it completely, because of the extensive amount in my tissues, and only had the surgeries to help with the quality of movement and to try and stop the leakage. (It did in some spots, but others never healed after the surgery and was left with small holes that still drain.) On the x-rays the large areas look like cauliflower chunks, which is kinda interesting, if it wasn't so annoying and painful at times. My hand/arm surgeon from NYC, who has had many sclero patients over the years (don't find that much!), has done what he could, but it's not stopping. He prefers not to do any more surgeries, but I may have to down the road. With still having areas that are leaking I can understand some of what you're going through.

I have just started with Pamidronate (3 days every 12 weeks) to see if it will help deminish the calcinosis. Since there is some news that it may help the disease you have, my scleroderma doctor wanted to try it out, and I'm willing to do it. There is no way to know if it will help me, or how long it may take...a year?? All I know is that I'm getting more spots and some are getting larger. This year alone I've had 3 very bad infections from the open draining spots and very concerned with that.

I'm finding it harder to bend and use tongs to pick up something from the floor. And trying to get my socks on...glad I'm not in a hurry :lol:!! Since Pamidronate has been around a while and doesn't seem to have terrible side effects, it's worth a try for me.

I hope that since your last post you found someone that has helped you. Also, for the others that are dealing with the calcinosis...I can't imagine how hard it must be.

take care everyone,
lavenderrose

#12 Joelf

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Posted 06 July 2012 - 07:50 AM

Hi Lavenderrose,

Welcome to these forums!

I'm so sorry that you're suffering so much with Calcinosis and I do hope that the Pamidronate will have positive results for you.

Now that you've found our forums and joined our community, I do hope that you'll continue posting and let us know how you're faring.

Kind regards,

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#13 Amanda Thorpe

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Posted 18 July 2012 - 03:44 AM

Hello Lavenderose

What a lovely username and sorry for the late welcome.

I don't have clacinosis but have read many posts about it and what an awful problem it can be. I have classified scleroderma symptoms into 2 categories (just for my own amusement) one is symptoms that can kill you and two is symptoms that feel like they will! :lol: :lol: I always put calcinosis into category 2 and that's just from reading people's stories and seeing pictures. Some symptoms are seemingly benign but hammer our quality of life, for me that symptom is foot and leg ulcers, for you it's calcinosis.

I do hope you have some success with this medication and please keep us posted.

Take care.
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