Hi i'm Sharon, i'm new here and my Husband has recently been diagnosed with Amyloidosis...

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Hi i'm Sharon, i'm new here and my Husband has recently been diagnosed with Amyloidosis...

My husband Dave is now onto the 1st day of his 2nd round of chemo.
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Re: Hi i'm Sharon, i'm new here and my Husband has recently ...

Good luck sweetie! My husband finished his chemo in October last year (for lymphoma) How long does each round go for? I've messaged you my email address if you want to chat in more detail. I'll be thinking of you. love Emily
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Re: Hi i'm Sharon, i'm new here and my Husband has recently ...

Hugs Sharon,a few years back my then nephrologist suspected that it was amyloidosis effecting my kidneys. He did a kidney biopsy and fortunately for me it was negative. How is your husband doing and what organs is it effecting? ron.
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Re: Hi i'm Sharon, i'm new here and my Husband has recently ...

I 'm sorry you and your husband have to deal with yet another problem . I read your story and it seems to me that you've had a lot going on before this . I hope his tratment goes well.
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Re: Hi i'm Sharon, i'm new here and my Husband has recently ...

Thanks Ron, Daves' kidney's thankfully are the only parts affected though the Odema he has with it is in both feet, legs, chest, stomach, neck, face, hands and arms.Because of this he can only walk a few steps at a time and due to low blood pressure that comes with his fluid retention and now also his meds, he nearly collapses when changing to a standing position..he is very depressed. We've been together for nearly 25 years and he hardly ever got sick and now whamo.Poor bloke.
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Re: Hi i'm Sharon, i'm new here and my Husband has recently ...

Thank you Silly, i hope so too. 🙂
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Re: Hi i'm Sharon, i'm new here and my Husband has recently ...

They still don't know what is wrong with my kidneys Sharon. I lose up to three gramms a day of protein thru my urine. I have had three kidney biopsies now and they all show problems with my kidneys but nothing that relates to the known kidney diseases. My rheumatologist and nephrologist both believe it is from chemo I had 14 years ago. They enhanced it with stuff called levamisole. It is a vet drug used to kill parasites in cattle and sheep. My rheumatologist is an ex oncologist and he is quite scathing on its use on people. The only drug that has helped my kidneys is methotrexate and that stopped working after a couple of years. My nephrologist and rheumatologist both want me to try humira and my neprologist has suggested cyclosporin,cyclophosphomide and imuran. I'm not going there ,I have had it with poisons.I do a 24 hr urine collection every three mos to monitor things. It has stayed static for a couple of years but I have had peripheral neuropathy for several years and it is getting worse. I have just been dxed with type two diabetes. It is starting to look like cancer was the least of my worries . Hugs to you and your husband I hope something turns up soon to help you,Ron.
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