Amyloidosis

[naomi24]

Incurable, about to begin chemo, but will the patient experience pain and is life expectancy very short? If anyone has any experience of this condition, its effects, and its treatment I would be grateful for any information.

[Sqad]

No I haven't had Amyloidoisis but it is an interesting disease.
I will await the personal experiences and the inevitable links to web sites, then if appropriate i will add my two pennyworth.

[Buenchico]

" . . . and the inevitable links to web sites".

Here are two to get you started:

Firstly, there's some good general information on the NHS website:
https://www.nhs.uk/conditions/amyloidosis/

However the FAQs section of the National Amyloidosis Centre's website might be better at providing more specific answers to your questions (including your one about life expectancy):
http://www.amyloidosis.org.uk/amyloidosis-faq/

[Sqad]

Well there you go an all i will do is to try an humanise the condition after you have read the informed links.

There re 2 types of Amyloid, 1) Primary Amyloid 2) Secondary Amyloid.

I am not going to deal with primary Amyloid as it covered in the NHS websites, except to say that it is autoimmuine disorder,affecting almost all and any organs of the body, rare, but when it presents, it presents as unexplained heart failure.

Secondary Amyloid ( I call it that as it explains the condition) is always secondary to some other disease. It was by far the commonest cause of the "Amyloids" as before antibiotics WW2 and just after, it was commonly encountered wherever there was PUS......osteomyelitis, lung abscess and empyema(pus) of the gall bladder BUT....with the advent of antibiotics, this association became divorced, but still it was linked with other chronic diseases e.g rheumatoid arthritis.

It's treatment is outlined in Buenchico's link, so i will leave it at that.

Life expectancy will depend upon the organs involved, but the prognosis is improving year by year.

[Sqad]

Sorry.....i missed your question re pain........pain is not a prominent characteristic of Primary Amyloid which your OP describes.

[Theland]

Are you OK Naomi?

[kvalidir]

I hope that this is not you or a loved Naomi and the very best to them in any event xxx

[Theland]

I echo kvals concerns. You are precious.

[naomi24]

Thanks very much sqad, and Chris, thank you. I’m working my way through all that information.

Theland/kvalidir, thanks for your concern. You’re very kind but rest assured it isn’t me. If it were I wouldn’t be posting about it.

[Peter Pedant]

sorry to hear it =
are you a lumper or a splitter
amyloid is one disease - and so ....
OR amyloid comes in very many forms and so ....

Me ? splitter - primary amyloid see above also has a genetic element ( splitting even primary ) and is earlier onset and more severe.

The other type is secondary to some other condition - such as chronic infection - and that ( obviously to my mind) will have an effect on the course of the disease.
so age of onset, cause and presentation all have an effect - -
and so I think - - - I would ask my treating doctors....and their answer will be tailored to the patient

usual rules: list questions, ask if you can record the interview, and take notes....

and no it is not painful - lack of pain is a feature ( painless enlargement of organs) and life expectancy see above is variable.....

and keep your *** up Mrs !
Christie are trying to discharge me ( its a cancer hospital and the only discharges are thro the mortuary) as I have survived 48 m after a relapse. "We all thought you would die quite quickly, your eye was a real mess!" - - good luck

[anneasquith]

I echo Naomi 's post at 8.11am .

[Sqad]

Asquith....which bit of that post do you "echo?"

[anneasquith]

Second paragraph !

[Sqad]

Why not the first paragraph?

I have to agree with you Asquith.....the section Body and Soul is becoming amateur and not fit form purpose BUT...naomi chose to indulge.

[anneasquith]

" chose to indulge " she did. But the op was not about her .

[Sqad]

I know ^^^^^

[kvalidir]

Is that an implication Anne that people who have something wrong with them personally shouldn't post in Body and Soul to get medical clarification? I too am unsure of what exactly you are echoing? Or was it simply the good wishes?

[Prudie]

For my part I read it simply that Naomi and Anne wouldn't post their serious medical problems on here that's all and neither would I. Some like to share all because of the great support they get, some are more reserved and private.

[anneasquith]

Its none of my business if Abers post their " medical issues". All I intimated was I would not .

[kvalidir]

That's all I was asking Anne, you're original post wasn't clear. Thanks for the clarification.

[naomi24]

Like Prudie, I thought anneasquith's post was clear. She simply agreed with me.

I've found the answer to one of my questions. Average life expectancy with this type of Amyloidosis appears to be just one year. Not a happy prospect. :o(