Weight Loss

When you read descriptions of sarc and its general symptoms, weight loss is usually listed as a possible symptom. How and why does sarc cause people to lose weight?

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Iv'e been overweight my whole life an have had scar. for over 20yrs only time I lost weight was when I had severe gastritis an ulcer have manged to keep it off but struggling to loose more due to pred. I lost 15lbs then since on pred I loss an gain 5 lbs a week. I HAVE BEEN DOING WW ONLINE AND LIMITING CARBS AS MUCH AS POSSIBLE IT is helping

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Hi again, Tawney.

Sarcoidosis (as you already know) is an inflammatory condition. Inflammation is a very metabolically active process - it uses energy to occur. This is part of why (I believe) people get fatigued with sarcoidosis. I explain to my patients that it's like running a marathon every day in terms of the "work" your body is doing and the energy it's consuming to maintain the inflammatory response. That said, if your caloric intake is low, one loses weight because their body is "exercising" on the inside. The same happens to people with other chronic lung diseases like emphysema and pulmonary fibrosis - they work so hard to breathe that it actually burns calories.

Eric S. White, MD

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My personal experience: I started Predisone 1 year ago and after 6-months into the treatment I developed diabetes. Could have been hereditary, my lifestyle, steriodal or all three. Once I took a diabetes education class, I learned how to reduce my blood sugars by "counting carbs" and other lifestyle changes like portion control. I cut way down on fast food (now maybe once a week vs. everyday) and changed from caffineated sodas to crystal lite. I've lost 26 lbs since July. I'm trying to exercise more. I get short of breath really easy and so tired. So I count my normal chores like grocery shopping and laundry as my exercise because I sure sweat when I'm done! I'm hoping with the weight loss the pressure of this fat is going to ease some of my pain. My liver/spleen is already enlarged--I'm sure all my "cushion" is not helping the cause. If my Dr. ups my Predisone again, I will probably lose this progress and eat my refrigerator.

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Thanks for the info Dr White. I was curious to this question also, since I've now lost almost 50 lbs since Christmas. Since starting the prednisone I've been watching my calorie intake and continue to lose about 2 lbs/week on ave. I've got about 10 lbs to go then I'll try to maintain that weight. One of the keys I've found to losing while on pred is to drink lots of water each day.

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Dr White your answer was brilliant. I have not had any doctor explain the weight loss to me in such simple terms. I lost 20 lbs before being diagnosed. That was one of symptoms along with recurring Iritis, extreme fatigue,loss of appetite ,oh yea and not being able to breath! Biopsy's done lie, welcome to the world of Sarcies, along with my brother and mother. Dr White you are a real asset to your patients! @Tawney thanks for asking the question.

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I'm doing the WW online too...........it is helping.............my clothes are getting bigger...........but retaining fluids.

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I have all the really unpleasant symptoms of Sarc, why can't I have weight loss????? I am not on steroids and have still gained 40 lbs over the last 7 years. I do watch what I eat strictly because I am diabetic, I think it must be that I am sooooo very sedentary becuse of pain and fatigue. I am also freezing all the time, was convulsively shivering last night in a room that was 70 degrees...

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I keep forgetting to amend my signature (which I also forgot) to include where I am from! Thank you Dear Sarc, for the brain fog....

Rhonda (from Southern California)
snowing and 32 degrees

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I'm with you Rhonda! No weight loss. Actual weight gain from pred. But, I love your explanation Dr. White, because I definitely suffer from fatigue, between working and being ill, getting through a day definitely feels like I'm running a marathon or more appropriately, I suppose, that my body is at war with itself. The fatigue is so hard. But I wouldn't mind some weight loss. lol

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It's the one symptom I wouldn't mind having. Struggled with weight issues my whole life. I eat pretty healthy, but probably still too much. Not on prednisone yet, but likely will be soon. I'm worried about the weight gain. I also have trouble exercising because of fatigue. Yikes!

Dr. White, thanks for the explanation. It makes perfect sense!

Roberta (from FL)

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Hi Dr White

As DeeDeeDebra has already said, that was a brilliant answer. My doctor (who is one of the better doctors around) has become very focused on my weight and seems to be exploring the possibility of malabsorption but I'm pretty sure that weight loss is just what happens when I'm at my worst and whatever disease I have is most active. Your answer leaves room for that to be a distinct possibility. In looking through old medical bits and pieces, I realised I'd forgotten this happened several years ago as well. I had to stop exercising because my usual exercise routine had me losing so many kilos and so worn out that continuing would have been silly. I never quite made it back to my normal weight and have never been able to really exercise (beyond walking with my dog) since. This last year has seen a similar process happen. As DeeDeeDebra described, weight loss and extreme fatigue were two of my earliest symptoms. I feel that focusing on other reasons to explain my weight loss is really a wild goose chase, that it's just simply a sign of active disease. It's a bit of a challenge to be both a grateful, compliant patient and push that I think we're losing track of the main issue. Having being 'fired' by my main specialist, I'm hesitant to really push on points. I've always been a small person, even when perfectly healthy. I really feel that figuring out the whole bigger picture is the answer to everything, including the shrinking frame.

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Like some others have already said, I can't believe I actually 'miss, (and want) that side-effect of sarc! I was a healthy, active young mother (125lbs) when sarc hit. Thanks to the fatigue and high doses of prednisnone - I really ballooned up! Then wouldn't you know it - after a long, wonderful remission - I lost quite a bit of the weight through the glycemic index plan - just to 'flare-up' again and regain the weight. Talk about depressing! Nothing like being sick and tired - plus have people think that you are overweight, puffy, and lazy! For some reason I want to sing the "Nobody likes me, everybody hates me, I think I'll eat some worms!' song from childhood!

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I was diagnosed last August with biopsies from lung and chest lymph node tissue. I've been extremely overweight my entire life. I had gastric bypass surgery almost 12 years ago and lost about 175 pounds. After about 4 years I slowly started gaining the weight back. In july, I was about 40 pounds below my original weight before the surgery. After the diagnosis I started losing weight so quickly that my pulm doc noticed about 6 weeks later that I had lost about 30 pounds. He asked me why I was losing weight. I said I'm not eating very much because I'm not hungry. He said why? I was so surprised by his concern having had doctors berating me most of my life about losing weight. Here I was losing weight, and now it's a problem. Well he was concerned because he was worried that it was a sign that my sarcoidosis was extremely active. I continued to lose 3-5 pounds every two to three weeks. And it appeared that the malabsorption part of the bypass surgery was working again because certain foods would cause extreme reactions. Then late January of this year he put me on 40 mg prednisone because part of my right lung is collapsed probably due to an enlarged lymph node pressing on it from the outside. After only 10 days on the prednisone I LOST 38 pounds due to the fact that everything I ate was passing right through me within about 20 minutes. None of my doctors had ever heard of weight loss due to prednisone, but this reaction and several other severe side effects resulted in my doctor taking me off the prednisone immediately. The GI issues have slowly been getting better (still having occasional problems), and I've lost about 50 pounds since the end of January. Last week he asked me to consider going back on the prednisone at a lower dose and I refused. Right now, I'm on no treatment for the sarcoidosis but we'll continue to monitor my blood work and PFTs to determine if another treatment option is needed.

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Hi Dr White

Since my last reply, I've read a little around the great explanation you gave about inflammation being a very metabolically active process. Could I ask another question, please? Is cachexia a different, more complicated process than just inflammation caused increased metabolism? I came across a 1999 article 'Fatigue & Sarcoidosis' by O.P Sharma and think it says that TNF can cause weight loss and muscle catabolism; D1,25 can enhance the ability of macrophages to release TNF; TNF may play an important role in developing cachexia and malaise. Did I interpret it anywhere near correctly? If so, that could be a clue for me as my body produces too much D1,25.

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Tawney -

Cachexia is a term we give to people who have significant muscle and fat wasting from various processes - cancer, HIV, end-stage lung disease, etc. It's very hard to conclude that TNF-alpha directly causes weight loss and muscle catabolism. It may do so in a dish (on cells) and it may do so in lab animals (usually mice). But mice are not people, and I can recount hundreds of articles in which we "cured" a disease in mice used as a model for humans but the same treatment doesn't work in humans. So I take it with a grain of salt.

Having said that, it may count as a possible mechanism for what I mentioned earlier about how inflammation leads to weight loss; TNF-alpha is a very potent inflammatory cytokine, and is the target of certain drugs like etanercept (Enbrel), infliximab (Remicade), and adalimumab (Humira).

Eric S. White, MD

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Thank you, Dr White. Not sure whether to feel sorry for the poor mice who featured in those articles or to wish I was a mouse so some of those cures could cure me. Humour aside, many thanks, your replies have helped me sort through so many issues and possibilities these past several weeks.

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Hi Dr. White, pleased to finally meet you, I am a neuo-sarc patient and just started 60mg prednisone one month ago, noticed that night sweats, cramping (legs) and a strange tightening of my upper body, from my chest to my head occurs. This sound strange to you or can pred react like this for some. As for appetite, that only lasted for 2 weeks, now I have to force myself to have something because I know I have to take some meds with food. What are the usual drugs taken with pred to control the craziness and insomnia that come with?
I feel like a crack fiend on a broken merrygoround
HELP,
BLAIZE.

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really,that never works out that way for me.

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BLAIZE -

I never say never when it comes to prednisone and side effects. But I often say never when it comes to dosing. My opinion? You should never be on doses higher than 40 mg daily unless the sarcoidosis is life or sight-threatening (eyes, optic nerves, brain, or heart). Otherwise it's just too much and doesn't offer any substantial benefits over 40 mg daily.

Hope that helps.

Eric S. White, MD

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Hi Tawney

Sorry to hear you are struggling with the weight loss, and double apologies for interupting your thread, I just wanted to ask Dr White a question!

Dr White I have started a new thread on the prognosis for bone marrow sarcoidosis and I would be very grateful of your opinion if you could possibly spare the time.

P.S. Definitely the best explanation I have read as to why fatigue affects sarcoid patients. It makes it so much easier to explain to the people around you why energy levels are sometimes compromised.

http://www.inspire.com/groups/stop-sarcoidosis/discussion/bone-marrow-sarco idosis/

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Sarcoidosis and the Body
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