Recent Posts

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General Discussions / Re: Losartan 100Mg
« Last Post by DEBBIEB on July 21, 2019, 04:24:58 PM »
Hi Ian
I too have asked about kidney disease and what stage my sister is at, palliative care nurse reluctant to do blood test as she obviously wants to concentrate on keeping her well for as long a time as possible rather than having test and establishing a time frame as although my sister wants to know there is a downside as she may feel worse for knowing and not actually enjoy the time she has left. I can see both sides. I have posted about stomach pain on the forum and described what nurse has said to look out for, I don't know if this will help at all but do look. I wish you nothing but good thoughts, if I can help in any way I will. Do take care.
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General Discussions / Re: Kidney disease stomach pain
« Last Post by DEBBIEB on July 21, 2019, 04:11:19 PM »
Thank you. I do try but totally overwhelming at times. I thank God I'm surrounded by supportive family and friends, my journey will begin when hers ends and it's a pretty frightening prospect. Xxx
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General Discussions / Losartan 100Mg
« Last Post by lan pham on July 21, 2019, 03:10:07 PM »
Hello All

My husband has AL. Stage 3-4 kidney disease.  Recently he has about 1200 Albumin (24 hours urine collection) Doctor started him on 100 mg Losartan per day.

Hopefully to receive any feedback on treatment of stage 3-4 kidney and leak of protein

Thank you Mariam and everyone   for sharing your journey and experience. I hope one day we will have a cure for Amyloidosis
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General Discussions / Re: Gene Silencing Drug approved on NHS
« Last Post by Miriam Vered on July 20, 2019, 06:53:26 PM »
Professor Gillmore says that they may be available within clinical trials for ATTR-CM sooner
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General Discussions / Re: Gene Silencing Drug approved on NHS
« Last Post by Micky on July 19, 2019, 04:32:38 PM »
Whilst this is good news the trials of Patisiran and Inotersen for wtATTR will not complete until 2022. Even if they are as successful as with hATTR they wouldn't get NICE approval until 2023 at the earliest so we at least still 4 years away for receiving any treatment.
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General Discussions / Re: Kidney disease stomach pain
« Last Post by AnnR on July 17, 2019, 05:00:31 PM »
Very sorry to hear how poorly your sister is. It must be very difficult for you as well supporting her. Wishing you both strength to cope.
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General Discussions / Re: Venetoclax with AL
« Last Post by AnnR on July 17, 2019, 04:57:04 PM »
Really pleased to hear that treatment appears to be working.
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General Discussions / Re: Kidney disease stomach pain
« Last Post by DEBBIEB on July 16, 2019, 07:40:25 AM »
Thank you miriam
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General Discussions / Re: Kidney disease stomach pain
« Last Post by Miriam Vered on July 16, 2019, 07:11:06 AM »
I recommend that you contact Darren Foard, the clinical nurse specialist at the NAC for advice on dealing with her symptoms:
darren.foard@nhs.net  020 7433 2814.
Good luck.
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General Discussions / Re: Kidney disease stomach pain
« Last Post by DEBBIEB on July 15, 2019, 10:31:01 PM »
Yes she was diagnosed in September last year but as she's now palliative not able to go to 2nd follow up in April this year. I presume her haematologist has let NAC know.
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