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ssakar

Losing Weight

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I was just wondering if any of you lost weight after being diagnosed with Scleroderma?

 

When I was diagnosed Oct. 18, 2006 - I weighed 140. Today I weigh 110.

 

The last month or so I know I haven't felt much like eating due to all the gas/indigestion.

 

Also, it seems most people gain weight after being on Prednisone. I haven't - but I am only on 5 mg. per day.

 

I'm not complaining about being 110 - but I sure don't wanna go below that!!

 

Would like to hear experiences ya'll have with weight gain/loss.

 

Thanks,

Sakar

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Hello Ssakar,

 

I have lost 50 pounds as a result of the disease. Back in June and July I could barely hold any food down and was vomiting regularly. That is now controlled. Originally, I was given 40mg of prednisone, which resulted in putting about 10 pounds back on. I have since been weened down to 10mg. and have lost 4 of those 10 pounds. I just don't have the appetite I used to have. I often think if I eat something I am going to pay for it afterwords due to the reflux. As such, I really don't have much interest in eating like I used to. The good news is I needed to lose all that weight and then some. On the other hand, it is not the way you want to lose it. Best of luck.

 

Dave

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Hi,

I sure have,, I have lost 20 pounds since last year.. I am down to a "whopping"101 pds. I am on 12 different meds, ranging from Norvasc for raynauds to methotrexate for fibrosis.. alot of the meds side effects kill my appetite, or worse. But, when I am hungry, I eat like a horse to make up for when I can't eat! My sister nags me to start drinking stuff like those instant breakfast mixes or the liquid supplements (several different brands out there). yuk!Give me a steak anyday!! I am learning to just go with it, and nibble alot thru the day,I try to keep it to healthy stuff, but I do love potatoe chips! I will be stocking the liquid drinks on my next trip to the grocery store. It can't hurt to have them cause I never know when I will need them. Hope this helps!

Best wishes

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Hi Patti,

 

I too am on Norvasc....plus Trental and Prednisone.

 

So what are you taking for Scleroderma? I don't guess I am taking anything for it? Unless it's the Prednisone? I am still so new to all this......

 

Sakar

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Hi Sweet,

 

I hear ya about the inactivity due to pain.

 

It seems like all I do is go from the bed to the couch to the computer....whoopi

 

Take care,

Sakar

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Hi, Everyone.....weight loss is why I took my son to his primary care physician the end of Sept. He had dropped below 150#. In July he was up to 158#. Four years ago, after he had his hip surgery, he reached close to 170#. doctor says he looks good (he's only 5'4") but agreed that significant weight loss without trying isn't good. That is what got the ball rolling on finding the Scleroderma.....not that anyone thought of that the end of Sept!!! He's down to 146# as of last Monday.

Take care, Everyone.

Margaret

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Hi Sakar

I am on Norvasc, Viagra, lisinopril, methotrexate, folic acid, asprin, plaquenil, flexeril, protonix,a round of Keflex,(antibiotic for finger ulcer) pain meds, the list goes on. I was on Trentall and prednisone last year, but discontinued as neither was effective. I just discontinued Nitro paste for the raynauds as it gave me tremendous headaches. Fatique seems to be part of this disease, I am Very fortunate that my job allows me to work remotely from home as the cold does a number on me.. I "commute" to my kitchen table and to the recliner on a daily basis. most of the meds I mention are for the raynauds and the fibrosis in my hands. As my job involves being on the computer all day,,, they are pretty painful by midday. But I am thankful to still be working! I am very glad I found this forum yesterday, I have been a frequent vistor to ISN for the last few years. This is where I have gotten a great deal of the information I have needed to make informed decisions for my health.

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Hi Sakar,

 

Back in 2004 I began to lose weight rapidly, and the doctors said it sounded like lymphoma with all the other symptoms. They did a biopsy, checked the ol' thyroid, and all was well in those departments, so they were a bit baffled at the time. I'm 41 years., stand 5'5", and although I'd never really gone over 115lbs. even in my younger days (except pregnancy), I couldn't keep my weight above 98 to 100lbs. last year regardless of how much I ate. I force feed myself a lot and now weigh 107, but it's hard to eat well when you develop food intolerances and severe digestive problems. It seems that pain causes the metabolism to spike as well, but at least if my bloodwork says there aren't any nutritional deficiencies, that's fine with me!

 

Best wishes,

Elehos

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Hi,

 

I too have lost a lot of weight. I lost 30 pounds (and I was not overweight, but didn't mind losing it). I think it was because I so drastically changed my eating habits because of my digestive problems.....I either felt nauseas so much that I wasn't hungry or I felt like food kept getting stuck or I was choking and I also lost my appetite (I think a side effect of some of the meds). As a result I started making myself smoothies to drink for lunch. Sometimes I use those liquid supplements you mentioned Patti...I just add things to them like frozen strawberries or other frozen fruit so that it is more palatable.....or juice and frozen fruit. My gastro doctor wanted me to increase my fiber but I explained that all of the foods high in fiber typically got stuck in my esophagus and he told me to get a high fiber cereal and use the blender to make it a powder and then add it to my food....so I put that in my smoothie too. It has helped some.

 

In the last year, however, I have put back on about 10 pounds. I think it was because I was put on Aciphex and that took care of a lot of my feeling nauseas all the time and a lot of swallowing/choking issues, so I started eating a bit more.

 

Warm wishes,

Heidi

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Sakar,

With the onset of symptoms, I lost 60 pounds in 6 months. (Granted I needed to lose about 40 pounds). My primary care physician and pulmonary doctor who was treating me for pneumonia both congratulated me on each visit for my weight lost. It went right over their heads when I told them I wasn't trying to lose weight! I couldn't swallow and my ability to walk and go up stairs was decreasing rapidly. They both blew it off. Well by the time I was finally diagnosed I was so weak that my hubby was having to help me off the coach and going up steps was impossible. I've since gained 30 pounds back, but initial drop in weight was scary. I also have polymyositis so a lot of it was muscle loss.

Big Hugs,

Janey


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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Hi all,

I'm at the largest weight I've ever been which isn't much but it's depressing. I'm being told it’s the meds or my cytoxan IV treatment but I'm only on 5 mg prednisone. Water weight? I think it's the inactivity. It's so hard to do anything, so tiring. I have ILD and walking faster than slow wears me out.

 

I’m going to try to walk down stairs. I work on the 7th floor. If I take the elevator up and walk down maybe it will help me lose a pound or too…

 

If you want a few of my pounds I’ll send them to you. He He!

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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My doctor also told me I would loose weight. What a joke. I never weighed over 114 pounds except when pregnant. It must be the ones diagnosed with Diffuse loose weight. The ones that have limited gain weight. I haven't changed my eating habits. I am on alot of meds and I now weight 168 pounds. That has happened in the past 16 months. I can't seem to stop it. I excersize, I walk, I eat and I sleep. I will play tennis when I get to Florida. I will gain more weight. Don't know how to stop it. I never thought I would be overweight. No one in my entire family is overweight. We have always been able to eat anything and as much as we want and never gain a pound. My weight gain started shortly after having a hysterectomy. But 54 pounds. Come on. Ouch! Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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