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Old Thu Apr 19, 2012, 11:58 AM
dfantle dfantle is offline
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Join Date: Jan 2012
Location: bellevue, wa
Posts: 150
Talking

Regarding the high levels of prednisone you were on for 2 months, that's terrible. No excuses on the docs part. Also, the lab should have been asking you the last time you had taken the cyclosporine (mine does every time).

If you have relapsed, I wouldn't let that that deter you from seeking treatment, however. I personally would base it on how transfusion dependent you are, and would look into seeing if the National Institute of Health would accept you as a patient. Although you have to pay for housing which can be pricy where they are, all medical care costs are 100% free for everyone who is a patient there, and the Drs are the best. They have a team who treats this so know exactly what you need before, during and after treatment. They'll then also work with your team when you return home to make sure they follow the protocols. A number of people on this site can help you figure how to contact them, if you want to.

Its crazy how on top of your own care you have to be. When I left the hospital following my ATG treatment they hadn't prescribed the prednisone so I asked about it and the Fellow who checked me out ( though not the main doc, should have known) said no. I am SO thankful for this site because I remembered reading about the prednisone and luckily have my Drs email address. I asked on this site, was told I needed it and wrote my Dr. who immediately responded and prescribed it *-the hospital had messed up. *I did miss 1 day of it, but fortunately that was all and at 3 weeks out, no serum sickness yet. Today I'm reducing to just 5 mg so almost off it .

Best,
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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