Loss of appetite

[Schmidhogan]

Texas Tracy in a previous entry mentioned that she has lost her appetite. I'm wondering if more of you have this problem and have any suggestions. I was diagnosed last October. I had normal hunger until around March when over a month it faded to zero. I do feel "empty" and try to eat but quickly become full. I'm having a hard time consuming enough calories and have lost about twenty pounds so far. I suck down one to two Ensures a day. My doctor doesn't think it's ALS related. My swallowing if impacted but fairly good. I do my share of choking and aspirating though. Ive been prescribed Remeron (Mirtazapine). Doesn't do any good. Pot helps a little. Any ideas? Alex Schmid

 

[nebrhahe53]

dont lose weight. I did and its the number one issue that speeds up disease progression. I too have trouble eating enough to keep weight on. The disease itself makes you burn more calories than normal.
Get a peg tube if necessary to help you keep weight up.

 

[Janie H]

I have gained about 30 pounds since last June, predisone makes me hungary all the time.

 

[nebrhahe53]

I think prednisone is a powerful steroid. Don't these make you retain water more? If so, much of that weight may be liquid and not real weight gain. I have never heard of prednisone being used for ALS. What symptom is it treating Janie?

 

[bigmark1954]

It has worked the opposite for me.....I have gained weight since my diagnosis. I have always been a "nervous eater", and with this doomsday dynamic, I have just been eating what ever I want. Unfortunately.......I like everything that is high calorie and bad for me
(ice cream, cakes, bacon cheese burgers, etc. etc. etc.).
I have noticed that food isn't tasting as good lately, but still love sweets.
My docs have told me not to lose weight, but as my legs weaken ......I am going to have to do something along those lines soon. I can still eat almost anything and can swallow with caution.

 

[patrick123]

I take 5 mg of prednisone every day. My joints are very prone to swelling so it helps.

 

[Schmidhogan]

The doc has recommended the peg. I'm going to be evaluated in September. Problem may be insurance. My Blue Cross could deny me unless my swallowing gets worse. As I wait for that to happen I continue to lose weight. Pesky problem that only a few of us seem to have.

 

[nebrhahe53]

Go to an ALS clinic-they may have a way to code such that the insurance wont deny-my blue cross policy is the same way-written to deny anyone with als any major benefits

 

[MaxEidswick]

> I'm having a hard time consuming enough calories and have lost about twenty pounds so far. I suck down one to two Ensures a day.

Alex,

haven't been able to eat since feb/14, but haven't lost a pound ...

try this (all blended, of course):

20 oz. water hour 1 in AM = saliva thinner. hydration
24-28 oz. fruit smoothie hour 2-3 = 350-500 cals
24-28 oz. whole chocolate+banana+2-3 tbls peanut butter hour 4-5 = 700-800 cals

24-28 oz. gazpacho+bud lite lime hour 6 = 300 cals + veggies + fiber for 'regularity'

repeat next 6 hours

hungry or not!

make sure you do your vitamins, too:

Centrum Silver Men 50+ TAB 1 per day by mouth Over the counter multi-vitamin
Vitamin C 1000mg CAP 2 x per day ALS 10/1/2013
Vitamin E 1000 IU CAP 2 x per day ALS 10/1/2013
Vitamin D3 2000 IU CAP 1 x per day ALS 10/1/2013
Folic Acid 800 mcg (0.8 mg) TAB 2 x per day ALS 10/1/2013
Dexilant 60 mg CAP 1 per day by mouth ALS 1/13/2014


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Max - Friday, August 01, 2014 12:18:54 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.

 

[MaxEidswick]

>I like everything that is high calorie and bad for me

rumor is that high calorie count is one of our best defenses! Keep it up, Mark. And have some cherry pie for me

 

[texastracy]

I eat every 3 - 4 hours. So far I haven't drop more then 4 pounds. I drink 6 glasses of a 14oz water cup. My new snack is fresh peaches with heavy cream and a little sugar. Yum. Yes, I don't feel hungry most of the time. I also don't feel full after eating a meal for long. It's weird.

 

[Schmidhogan]

Thanks Max. I think I'll need a tummy tube to get all that down. May be the way I'm heading. Already have a bipap, why not a tube. But the we're going back to the quantity vs quality discussion. No trach for me. Alex

 

[Schmidhogan]

I like peaches

 

[MaxEidswick]

>But the we're going back to the quantity vs quality discussion. No trach for me. Alex

Ditto that!

 

[MaxEidswick]

>I like peaches

me 2 ... i'll ask Sandy to grind some in!