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Denelle

Appetite

26 posts in this topic

Hi y'all,

 

I was wondering if Scleroderma has affected your appetite. Do you still get an appetitie or feel hunger pains?

 

I no longer do ... and I don't know if it is from the drugs I am taking or from the disease process. I am very interested to hear from others about their hunger.

 

Thanks for replying!

 

Denelle In Minnesota :D

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Hey Denelle In Minnesota,
Brrrr..

I take prednisone and it definitely affects the appetite. I crave sugar like crazy and I want to eat all the time ugh. But now I'm also on cyclophosphamide which has given me nausea and suppressed my appetite. Now all I eat is veggie soup... so I'm all over the board.

sparkle * sparkle
peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Denelle,
During the first year or two, I ate only because I knew I had to. I didn't have an appetite, it was difficult to swallow and I always felt full. Now I do have an appetite but I still feel full quicker than I use to prior to becoming ill. I do eat small meals because if I don't I regret it. I reflux very easy and that's no picnic. I prefer to avoid that at all cost. I never get hunger pains, but I do desire food especially if its tasty or sweet. I find fruit extremely appetizing and could probably live on it alone, but I try to mix things up as we should and eat a balanced diet. Sometimes that's not easy.

Like Peanut, back when I was taking oral cyclophosphamide I didn't have any appetite at all. So it could easily be a combination of the disease and medications. Please make yourself eat. You need the nutrients. Become a nibbler and nibble all day. smile.gif

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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This past year my appetite has decreased dramatically. I may feel really hungry but when I start eating I can only get a little food down. I seem to fill up really easily. Ive lost 40 lbs in the past year (which I'm glad about). Sometimes the food seems to stop at the top of my throat and doesn't want to go down the right way. I'm having an EGD done in a couple weeks to see if my esophogus needs stretching.

 

Sherion

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I don't have an appetite as in longing for food, but do appreciate certain favorite foods. Like the others, being presented with a "normal" serving, it's way too much food and I fill up very quickly. I average about one meal a day, and it tends to be too much. Even take out mini servings can last me three days. I've never be a foodaholic, so it may just be prior training. I could take or leave food. I eat generally, because I have to.


Tru

 

It is what it is...........

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Hi again :D ,

 

Does anyone else out there have thoughts on appetite and how scleroderma may have affected theirs.

 

Honestly, I don't feel hunger pains, but that does not mean that I don't eat. I don't eat right because I eat based on my cravings. Usually I crave things that are sweet rather than nutritional. I have gained weight, although some of the drugs that I am taking may have contributed to that.

 

Do you think not eating right could be making me shaky? Sometimes I notice that I am very shaky and unsteady. I'm not sure why exactly... something else to ponder.

 

Warm in MN,

Denelle :P

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Denelle,

My hands tremble. I've asked about it and doctors say it's the steroids, maybe the prednisone and other meds I take. Sclero has made my hands weak and trembly. Blood sugar or lack there of can also cause shaking. Are you on prednisone cause it can cause weird cravings that include an insatiable appetite for sugar.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Nope, not on any steroids. I will refuse to ever go on them again. When I was on them, only 7.5mg, I had thoughts of suicide. So as far as I am concerned, that is a drug that I am "allergic" to.

 

Isn't it weird, when you think about, how we have such weird symptoms for this disease. They are often so random... and different from person to person. That's what is so frustrating about getting treatment; everyone is different and reacts differently. If you have strep, you take antibiotics - simple. And most of the people have similar symptoms, too.

 

Just pondering the vast ocean of difficulties associated with having scleroderma... and I'm sure you can all relate.

 

Warm in MN,

Denelle

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Denelle,

I have lost my appetite. I do not look forward to meals, but I know I have to survive. Many times I will have same thing whole week for lunch. Most of my lunches have been beans, tofu, and rice. I have lost about 20 lbs in two years. I am around 133 lb and for my 5 feet 5 inch height that will be little bit on low side and I am glad to be on low side.

One great side effect of this has been strict control of my diabetes. My A1C stays below six which is excellent for diabetic patient.

 

Food is no longer I enjoy, it is just a necessity to survive.


Kind regards,

 

Kamlesh

 

 

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hey there ,

i dont have a appetite now and eat very little , but for some reason I crave haggis haha :unsure: no not pregnant just craveings hugs jaxsxx


live life for today and not for tomorrow

 

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Ha, ha. Haggis is traditionally made from sheep offal. Old recipes had you cook stomach bags along with the pluck (the lungs, liver and heart connected to the windpipe). The resultant cooked stuff was added to oats and various seasonings, stuffed in the small stomach bag and steamed.

 

Commercially available haggis is cooked in plastic casings (like sausages) and even come in vegetarian varieties. It tastes similar to the Cajun boudin or scrapple. It is excellent along with an egg breakfast or for a full meal including a clapshot of neeps and tatties (turnips - really like your rutabagas and potatoes). I sometimes serve it with red cabbage and potatoes or carrots and potatoes.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Just commenting on my personal eating habits.....

I sometimes think I could go days without eating, if I knew I wouldn't get very ill..........

 

There is no way I can eat breakfast anymore - so I drink a generic liquid diet drink - at least it has vitamins in.......

I can't eat Lunch, and have to force myself to eat Dinner anymore, and some nights I could just gag at the thought of eating.........

 

I guess nothing really appeals to me anymore, and thus making it really tough, because it has made me not want to cook anymore, although I still do it.........I can only eat so much, and then that is it........I've had enough.......

 

All my doctors know of my eating habits, and haven't really screamed at me yet - they all say, it's not the best, but just hope I will continue to do my best to eat a half decent dinner..........

 

I haven't lost any weight, but a lot of people tell me that is because I'm not eating enough and my metabolism is slowing down......

 

Take Care........Hugs.......Donna

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Oh boy can I relate to this thread! I've had SD now for 8 years. Eating has been a primary concern as I'm the same as what you've all described. No appetite, when I do eat, can only eat such a tiny little amount and then I am SO full and food just doesn't appeal. I lived on Ensure for a long time, forcing myself to drink 4 cans a day. Now, my pulmonologist has put me on Megace and that has really helped. It's an appetite stimulant. And then there's the whole issue of reflux to consider.

 

I find that I get in a rut with the foods that I eat as they're mild and easy to eat. One thing that I frequently make is what I call tuna noodle casserole but it's not a casserole, it's more of a one-pot dish and it's so delicious and creamy that I just love it. I melt butter in a pot, add cream or half and half. To this I add freshly grated parmesan and tuna, chopped up very fine. Then I add baby peas. At the last, after the sauce has cooked for a few minutes, I add angel hair pasta. Done. Very easy. Mild. Delicious.

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Before they figured out that my SSc was affecting my small bowel (bacterial overgrowth) I lost 80 lbs. I was never hungry and could only eat a little bit and I would feel full. Once they put me on antibiotics I was able to eat normally and gained back about 50 lbs (which made my weight about right for me). I still don't feel hungry, but can eat an appropriate amount. If I over eat I can end up in the hospital with an NG tube. I'm also on prednisone and like many of you I crave sweets, like chocolate. :D

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Emmi,

I have lost weight, too, but my rheumatologist doesn't seem concerned about it. I also was already skinny! I have very little appetite, but I still do enjoy some food some times! Many days, I would love to just skip it all day long. Of course, I don't dare do that because I'll just lose more weight!

 

Mary in Texas

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I haven't felt hungry or had hunger pangs for a couple of years. I just ate by the clock.

 

This spring I started having problems with feeling full after a few bites and lost 25 pounds in 2 months. Had a gastric emptying scan done and it showed my stomach was emptying slower than it should (75% of test meal was still in stomach at test end while taking Reglan).

 

Now I eat by serving size. The joke at work is that I eat all day long - and I do - a spoonful of applesauce, a spoonful of cottage cheese, a spoonful of peanut butter :D. On days when I really can't eat anything I drink a hot instant breakfast drink.

 

I always said if only I didn't feel hungry I'd lose weight. Be careful what you wish for :rolleyes:

 

Ann


Ann R

 

If you sweat the small stuff you have wet, soggy small stuff.

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You know its quite amazing how prednisone affects the appetite. After pestering and pestering my rheumatologist, he's finally letting me lower my predisone 1 mg/month till I reach 5 mg, so immediately dropped from 10mg to 9mg. Wow my appetite is less than a third and very little in the morning. I still crave sweets but not as desperately.

Watch out cheecks, belly & butt you're goin' down!

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi, Ann. Welcome to the ISN Sclero Forums. It's so nice to have you join us. You seem to have a good sense of humor in spite of your illness. I look forward to reading more of your posts. Please let us know if there is anything you need help with.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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I've lost 35 lbs since I was diagnosed in Feb. 2007. I lost my appetite right after I started to get sick and it hasn't come back yet. I think it's a combination of the meds and the disease. Good Luck !!

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I have that problem also . I find if some one else cooks for me I "m more likly to be able to eat , than if I cook. But it is still difficult .

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My experience with appetite is similar to the prior posts as well. When I initially got sick I lost 30 lbs in the first year. I lost this weight on high dose steroids and low thyroid levels. My doctors keep an eye on my weight and I try to keep up my calories.

 

Now that I am feeling better I am enjoying food a lot more but I cannot seem to gain weight. I don't enjoy cooking because of my claw hands and I do much better when other people help me prepare meals.

 

Thanks for the reminder of how steroids can affect your moods. I am tapering off now and it is really hard.

 

Rosa


Rosa

Diffuse Sclero

dx Jan 2006

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