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Calcinosis


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#1 NothingNew

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Posted 04 August 2007 - 02:32 AM

Hello everyone.

I do not have any of these awful diseases but my wife is severely afflicted with them. She's been told she has the following: CREST, Scleroderma, Polymyositis, Mixed Connective Tissue Disease, Rheumatoid Arthritis, Interstitial Lung Disease, and the list goes on. She's been seeing the best rhemumatologist in our area but he never ever talks about her blood work. I've seen many posts here and in other forums where people talk about specific blood markers which my wife and I are totally ignorant of.

I just got my wife out of the hospital yesterday. She has calcinosis from her knees to her skull and one of the sites got infected. It's horrible going to the hospital and nobody there knows how to help her. They always say she is the worst case they've ever seen, if they've ever seen another case. We can't get her any good antibiotics though unless we go to the hospital. No therapy has seemed to help her and the future seems very bleak for us. Anyway, I don't want to be a downer but that is how we feel about it. I hope to maybe find something here to help my wife in some small way.

#2 Sweet

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Posted 04 August 2007 - 06:03 AM

Hi NothingNew,

Welcome to the sclero forums. I'm so very sorry your wife has been so ill. It's a scary thing her for and for you as well. I think it's great you are seeking out here in her behalf. You will find a lot of information, support and friendship here. Post often, ask questions, let us help you if we can.

Hang in there.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#3 NothingNew

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Posted 04 August 2007 - 07:28 AM

Thanks for your reply Sweet. :)

I hope to find something that will give her a little bit of hope. I know that some sclero patients only find the calcinosis a nuisance but for us it is all we can handle. They get so large and sometimes they pop open, other times not. She's has had surgery four different times, getting multiple sites removed each time. No one will operate though on the ones on her buttocks, which of course are the ones that cause her the most trouble. When one gets infected, it makes her physically ill all over in addition to the painful lumps. It is most frustrating when the best doctors around don't want to try anything for her and don't explain very much.

I guess I'll be lurking and asking questions from time to time....

#4 Sweet

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Posted 04 August 2007 - 07:39 AM

Well you just ask away my friend!
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#5 jefa

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Posted 04 August 2007 - 09:13 PM

Hi, Nothing New, and welcome to the ISN Sclero Forums. I have moved your posts from the Getting to Know You thread as the problem you write about is important. Hopefully it will get some more attention here from other forum members with the problem. Please feel free to add another post to the Getting to Know You thread to let us know more about you and your wife when you get the chance. I think you will find this to be a great place for information and support and hope you can find some relevant information on our Calcinosis page.
Warm wishes,
Jefa

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#6 nan

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Posted 05 August 2007 - 08:56 AM

Hi,
I have calcinosis on my elbow. It is very painful. I can't imagine having them all over my body. I am so sorry that you wife is suffering so much. I send good vibes your way. :D
Nan

#7 bookworm

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Posted 05 August 2007 - 09:48 AM

Hello, NothingNew,

I'm sorry to hear how ill your wife has been and is, but I want to tell I believe there is hope! You didn't say what medicines, if any, your wife is taking or has been taking, but it does appear that she has been diagnosed with Scleroderma. If none of the doctors knows what to do and has never seen a case this bad -- or never seen a case at all, my first suggestion would be to get your wife to a scleroderma specialist. There's a list on this website of the sclero experts all over the world. I hope one of them is near you so that you can manage to see him or her.  Go there!

The calcinosis can be a real problem for some people. I haven't had much of a problem with it, but I did have one very severe calcium deposit on my right knee. It got infected and I had red streaks running from ankle to knee. My rheumatologist wanted to put me in the hospital for I.V. antibiotics, but we tried a very strong oral antibiotic first and it worked! It was a very, very slow healing,though.

Everything seems to heal very slowly on sclero patients!

Although they can't yet cure scleroderma, there are more and more new and wonderful treatments for it and there are so many drugs that really help the symptoms and help the patient to feel better!

I have CREST (which is a form of scleroderma) and rheumatoid arthritis and I take medicines for both of these and the medicines really, really help me to feel a lot better.

I hope you will actively pursue this because your wife really needs your help right now!

Mary in Texas

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#8 Sheryl

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Posted 05 August 2007 - 10:47 AM

NothingNew, I hope you tell your wife of all our wishes for her recovery. I hope one day she will wish to join in on our huge group. I can't believe how more and more people every day are developing Scleroderma or other connective tissue diseases. Our numbers are growing. People are starting to know other people who also share our disease. We aren't alone and some cures are happening daily.
Strength and Warmth,
Sheryl

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#9 NothingNew

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Posted 09 November 2009 - 05:56 AM

Sorry it has been so long since I visited this forum!

My wife still has many many problems with calcinosis. I'm guessing she has over 150 different deposits over her body. She had to be taken to the hospital today because her right hand is so swelled up that it is making her whole right arm hurt. Her pain meds were only working for 2 hours where they normally 'work' for 8 hours.

Is there any information I could show to her doctor to try to get her on Viagra or Cialis to help with this?

#10 Jeannie McClelland

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Posted 09 November 2009 - 06:50 AM

Hi Nothing New,I had a look in the collection of articles in the Main ISN site that deal with treatments for Calcinosis and also did a web search for articles published within a year of today's date. Unfortunately, I didn't find anything suggesting either Viagra or Cialis as a treatment for calcinosis. Revatio (Viagra) is used sometimes in the treatment of pulmonary hypertension, which is sometimes occurs with scleroderma and maybe where the idea of it being used to treat calcinosis came from.

It seems like diffuse calcinosis is very difficult to treat, which, of course, you already know. I'm really sorry I couldn't find anything helpful to you or your wife. You both have my heartfelt sympathy in your battle against this horrible complication.

Best wishes,
Jeannie McClelland
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#11 Catty

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Posted 09 November 2009 - 07:59 AM

Hi Nothing New!

I am so sorry that your wife is having these severe problems with Calcinosis. I have had scleroderma for close to 30 years now. I have had Calcium deposits very very bad. I have had them on both knees, both elbows, fingers, buttocks (Upper), lower left arm.

The absolute only thing that has ever helped me is to have them taken out. I had problems finding a doctor who wanted to take them out but I kept going from doctor to doctor until I found one. The last large one I had removed was by a plastic surgeon. He told me that Plastic Surgeons didn't to do that type of surgey. I said " YES...THEY DO" I said If I need a skin graft that calls for a Plastic Surgeon! LOL! He shut up then. He did not want to do it but he did because I was sick and tired of doctors giving me excuses about it.

The deposit was HUGE (6 inches by 6 inches) He was shocked when he took it out and saw it. He said it stood up on the table by itself. I hugged his neck and thanked him over and over. My secret is not going back to the same doctor over and over. Sad to say but I would go from doctor to doctor until I would get one more taken out. Sometimes they will take out several at a time.

Tell your wife she just might have to beg them. I did many times but HEY! It got the job done. LOL!

DO WHAT YOU HAVE TO DO! As long as they are in there they will eventually come to the surface and get infected.

When they take them out they need to try to remove every grain they see so they will not return. You may have to tell them that. By the way, I heal just fine.

Shelly Ensz (in here) has seen a picture of my deposits.

I have never heard of any medicine that will help with deposits (Like stopping them from forming.)

Good luck! Keep us posted please!

Hugs,

Shirley

#12 NothingNew

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Posted 10 November 2009 - 07:42 AM

Thanks Cattie & Jeannie!

She's still in the hospital with doctors saying they won't do anything for her surgically. She's had many deposits removed by a plastic/hand surgeon in the past and I'm trying to get him to work on her again. The trouble is, he is in one hospital and my wife is in another. I have no idea how hard it would be to get her transferred.

It's been a struggle as usual to get them to give her enough pain medication to keep her from screaming. Hospital just don't really have a clue as to how to deal with someone with scleroderma.

:(

#13 Catty

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Posted 10 November 2009 - 10:15 AM

If nothing else maybe you could get him to consider taking out the ones that is hurting her the most.

That would help some at least. The sad part is that they really don't know how painful these deposits are. Most of the time they form over nerve endings. I don't know why.

Tell her that I FULLY understand what she is going through and while you are at it.
Give her a hug from me. :emoticon-hug:

Let us know...

Catty

#14 Sam

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Posted 11 November 2009 - 04:28 AM

I too have calcium deposits, I have some on both forearms which the left one will be removed soon. I had them on my right knee for years and finally I just had enough of taking antibiotic after antibiotic and nothing helped so I opted for surgery and glad I did that was back in 2003 and still so far they have not come back to that site that I know of. I see an orthopaedic doctor for this. I hope this helps and sorry to hear your wife is going through this it is very irritating to me to.
Sam