Reviewer: babsh, 65-74 Female on Treatment for 1 to 6 months (Patient)

Comment:
Ill feeilng when I first started taking the drug. But thanks to the treatment my sore has completely healed

Comment:
Ill feeilng when I first started taking the drug. But thanks to the treatment my sore has completely healed
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Reviewer: dh, 45-54 Male on Treatment for 1 to less than 2 years (Caregiver)

Comment:
My daughter was diagnosed with calciphylaxis. We were told she had about a year to live and all they could do was give her pain medicine. She had necrotic tissue on her toes and showed signs of very poor circulation. The calcium deposits in her body showed up like polka dots on her X-rays. We found that through her endocrine doctor there was an experimental treatment using this medicine. The ... Show Full Comment

Comment:
My daughter was diagnosed with calciphylaxis. We were told she had about a year to live and all they could do was give her pain medicine. She had necrotic tissue on her toes and showed signs of very poor circulation. The calcium deposits in her body showed up like polka dots on her X-rays. We found that through her endocrine doctor there was an experimental treatment using this medicine. The medicine is very nauseating and she had to take several medications to help with this. After 1 year of treatment with 2 treatments per week, her wounds have healed and she is no longer taking any pain medication. It has truly been a miracle. We are still here after 2 years. With diet and medication to control calcium intake she is stable and doing great. If you are diagnosed with calciphylaxis find a endocrine doctor fast and have these treatments. It has saved our daughters life.
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Reviewer: mlckec11, 45-54 Female on Treatment for 1 to 6 months (Patient)

Comment:
I see I am the choosen only one to review this drug. I feel special *smile* I started Sodium Thiosulfate IV during the second week of April 2007. This was a last resort experimental treatment for severe Calciphylaxis I had. I got a central line put in my arm and did this medicine IV 3 times a week at home. This Calciphylaxis has a 80% mortality rate. Mainly due to the severe open wounds this cause ... Show Full Comment

Comment:
I see I am the choosen only one to review this drug. I feel special *smile* I started Sodium Thiosulfate IV during the second week of April 2007. This was a last resort experimental treatment for severe Calciphylaxis I had. I got a central line put in my arm and did this medicine IV 3 times a week at home. This Calciphylaxis has a 80% mortality rate. Mainly due to the severe open wounds this causes. Most people get infections and go septic and die. I had been on just about every kind of heavy duty pains drugs you can think of. I was put on Pallitive care at that time. My husband was told to get my affairs in order because they didn't expect me to live. A wonderful doctor at My hospital did some research in the meantime and stumbled upon a few journals and articles where a few (very few) people had tried this treatment for Calciphylaxis. I believe I was only the 15th person in the US to try this experimental treatment. After starting the medicine, I was out of pain and off all pain medication within the first 4 days. Within a few weeks we started to see major improvement in my large open wounds. After doing wound care for almost 2 years, this was the first time we saw anykind of improvement. About 3-4 months into the treatment my wounds were 50% healed. The only major side effects to this medicine was severe nausea and vomiting within minutes after starting the treatment. But with the near death condition I was in,I was willing to put up with any side effect at that point. I only took the treatment for about 5 and a half months. Due to failure and infection of my central line. Nine months later all my open wounds have currently healed. As of about a month ago.We have finally stopped all wound care after almost 2 years. This was a miracle life saving drug for me. It has since be used on a other patients, but didn't work as well as it did for me. That is 100% proof of what's on this board, Not every Drug works, the same for Everyone! Always look at ALL options!
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