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devineone (@devineone)

AL amyloidosis

Blood Cancers & Disorders | Last Active: Nov 12, 2018 | Replies (13)

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@devineone

My husband has finished his 90 day treatment on CyborD the numbers are very slightly improved so the doc said to continue on the same however because of his ESRD and this AL Amy he seems to be deteriorating every day, no appetite, no energy and very low BP we give him midodrine 10gm 3times a day to try to get bp up however does not seem to be working as effectively as previously. He is 76 years old, has anyone been in this situation, eg; ESRD previous to being diagnosed with AL Amy ? PS he is on Peritoneal Dialysis since the onset of the AMY previously was on Hemodialysis for 3 years.

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Replies to "My husband has finished his 90 day treatment on CyborD the numbers are very slightly improved..."

I would like to invite @oldkarl back to this discussion as he has amyloidosis and has a ton of experience and knowledge to share and may have some insight on ESRD and amyloidosis.