Recent Posts

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General Discussions / Re: Inotersen Injection
« Last Post by Pat on Today at 04:46:57 pm »
Hi, I have been on inotersen since the beginning of Sept 2019. I did suffer with an itchy red rash on a couple of occasions when I first started injecting,  but I am pleased to say it hasn’t been an going issue.
I am sure that you do this, but I always alternate the leg I am injecting into each week.
Best wishes Patrick.
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General Discussions / Re: Consultants
« Last Post by Joca on Today at 01:08:49 pm »
Consultants! So many like to appear omniscient butmedicine is such a complicated area that even within their own speciality they have a lot to learn. I went to see a dermatolist last week about a chronic toe ulcer and she did not quite believe I am not diabetic an that my leg neuropathy and heart failure are caused by something else entirely. Luckily my wife could explain. (I am completely deaf and thus ignored entirely by some consultants although not all).
John
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General Discussions / Re: help with my Graduation project
« Last Post by WildTony on Today at 01:00:32 pm »
Hi Lubna
I have just read this.  I would be happy to help.  No doubt you are aware that there are many types of Amyloidosis.  Mine is wild type ATTR-CM.  A low-salt, low-fluid diet worked wonders for me, helped with a little diuretic.  I went from struggling to walk 100 metres to enjoying 3 km walks.  That was in my first year after diagnosis.
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General Discussions / Re: Is this normal?
« Last Post by Joca on Today at 12:55:27 pm »
Hi, I am sorry to hear about your poor father in law. Is he on blood thinners like Warfarin or Apixaban? I take the latter and regularly get superficial brown blood blisters on my arm which are not itchy and clear up after a couple of weeks. Apparently this is not uncommon. Obviously though this is the least of his problems and I hope you can find a care home space soon.
John
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General Discussions / Re: Amyloid plus Covid 19
« Last Post by Joca on Today at 12:38:51 pm »
Gary,
I am sorry to hear of your terrible experience. I hope you eventually make a good recovery. COVID-19 seems to affect those with Amyloidosis particularly badly. My daughter who works for ONS told me back in mid May that 32 people who had died of COVID-1q9 had Amyloidosis  as an underlying condition. So stay especially alert folks!
John
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General Discussions / Re: A Tribute to Pat Pinchin
« Last Post by Joca on Today at 12:24:21 pm »
Thanks Mark for letting us know this sad news. I had an email from her about two months ago when she sounded worse than usual but I never expected that after so many years battling her Amyloidosis that she could be mortal. My condolences to Patrick, their children and grandchildren.
John
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General Discussions / Re: A Tribute to Pat Pinchin
« Last Post by Helena on Today at 10:24:10 am »
I never met Pat in person but she still left a huge mark in me. She provided support at a very difficult time in my life. She was a selfless human being, sharing information in the name of common good. I know she helped so many patients cope with amyloidosis through several forums while struggling with her own disease. We exchanged several messages and her resilience always came through. I have always told her how kind she was and I hope she knew how important she was. I am very saddened by her passing and will miss her dearly. Condolences to her family. Rest in peace now Pat.
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General Discussions / Re: A Tribute to Pat Pinchin
« Last Post by jakradice on Today at 10:21:55 am »
I'm so sorry to hear of Pat's death. She was so helpful and supportive to me when my dearest love was a patient with amyloidosis. She always had useful information as we navigated our way through such difficult times. She contributed to our fundraising efforts for the NAC. My sincere condolences to her family and friends.
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General Discussions / Re: Amyloid plus Covid 19
« Last Post by GiilA on Today at 09:25:22 am »
Sorry about the delay in responding but COVID-19 seems to have taken over our lives and I haven’t looked on the forum for a while.
My husband who has Al in heart and kidneys had COVID-19 in March. He developed a temperature and generally felt unwell so we contacted the hospital where he gets his treatment. He is prone to uti’s so thought he might have one. They called him in, tested him and sent him home with antibiotics, but got a call the next day to say he’d tested positive for Covid-19 The following day he started to vomit and had diarrhoea so we contacted the hospital again, who then called him in as they were concerned about his kidney function, which had dropped significantly.  He was in hospital for 8 days, being treated mainly for his kidneys and low blood count. He didn’t develop breathing problems at all.
When discharged, he had lost 3kg and was weak for a couple of weeks but is now back on his low dose lenalidomide, which he has been on since October. His lambda light chain results from the NAC show they are very slowly coming back down to previous levels, so we are optimistic that he is returning to his fairly stable state.
A lucky escape from COVID-19!
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General Discussions / Re: cardiac markers
« Last Post by Miriam Vered on July 06, 2020, 01:24:17 pm »
Raised levels of both markers is usually a sign of heart disease. It is not usual for one to be raised and the other normal.
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