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Losing Weight


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#1 ssakar

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Posted 05 January 2007 - 04:54 AM

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

#2 GocartMoz

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Posted 05 January 2007 - 05:17 AM

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

#3 Patty1

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Posted 05 January 2007 - 05:59 AM

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

#4 Sweet

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Posted 05 January 2007 - 06:04 AM

I'll be the odd man out. I've gained 35 pounds. I figure it's due to meds and inactivity due to pain.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 ssakar

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Posted 05 January 2007 - 06:09 AM

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

#6 ssakar

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Posted 05 January 2007 - 06:11 AM

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

#7 Margaret

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Posted 05 January 2007 - 06:29 AM

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

#8 Patty1

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Posted 05 January 2007 - 06:42 AM

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.

#9 barefut

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Posted 05 January 2007 - 07:06 AM

I've gained too. Inactivity due to pain. I try to not let it bother me so much. The extra weight may come in handy someday ;)

#10 Elehos

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Posted 05 January 2007 - 07:11 AM

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

#11 Heidi

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Posted 05 January 2007 - 08:03 AM

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

#12 janey

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Posted 05 January 2007 - 09:49 AM

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

#13 peanut

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Posted 05 January 2007 - 11:17 AM

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...

#14 Sheryl

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Posted 05 January 2007 - 12:52 PM

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

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#15 barefut

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Posted 05 January 2007 - 02:42 PM

Nope.

Diffuse here. All 214 pounds of me at 5'7". Before diagnosis I hovered around 190 (post pregnancy)

I can't make myself move when everything is stiff and hurts :( Nice excuse huh?

#16 scalivero

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Posted 05 January 2007 - 03:22 PM

Hi, everyone: New here, still trying to put a name on my diagnosis but we know I have an autimmune disease (ana=320, hardening of tissues under skin of extremities, other areas?). Deep morphea seems the most likely cause but nothing has been ruled in or out yet. I am glad to find this website! I am a single mom and it's a scary road to walk down alone.

Re: weight loss, the weight loss was my clue to seek help. I had started running again over the summer, and around late October I started feeling the hardening under my skin above my right hamstring. I put off the doctor's visit (figured it was a muscle or something) until I started losing weight despite the amount I was eating -- around thanksgiving and holiday, I should have gained weight! I am still losing, even on 10mg/day of predisone. Not complaining, I could stand to lose some, just not this way.

Is weight loss common in the early, inflammatory stages of the various forms of scleroderma? Just curious.

Thanks for listening.

Susan

#17 Heidi

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Posted 05 January 2007 - 04:07 PM

Hi Susan,

I just wanted to take a minute to welcome you to the forums! I am glad you found us and have joined in by posting. I am just sorry that it is because of your suspected scleroderma. I do hope that the doctor (are you seeing a rheumatologist?) can provide some answers and some relief of your symptoms soon. I am sure you will find everyone here very warm, encouraging and supportive....and more then willing to provide information and advice when we can!

Again, welcome!

Warm wishes,
Heidi

#18 Sweet

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Posted 05 January 2007 - 05:54 PM

Hi Susan!

Welcome to the Sclero forums. I'm sorry it's due to you being ill. You'll find a lot of information, support and friendship here.

We look forward to getting to know you.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#19 ShawMJ

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Posted 05 January 2007 - 07:28 PM

I'm a diffuse one too.I wish I could say I'd lost weight,I did when I was in the stages 0f being diagnosed.Went down to 143 pounds from 187.That was then but now like some of you I weigh more than I ever in my life thought I would ever weigh because I was always so much smaller than this.Pain is also what keeps me from exercising and fatigue too,who wants to exercise when all they want to do is sleep? And thats not always happening,I stay awake many nights including night before last.Pain keeps one from doing what they knw they should be doing,I'm afraid my internist will chew me out when I see him but he can just chew away its not him thats hurting and tired! I really do want to lose it though.I also have no willpower as some do.Keep telling myself I will try again but then here comes the pain and fatigue and I'm back to square one.Anyway maybe some day I will lose it.its good to know I'm not the only one.Smiles and hugs,Mary-La.

#20 HeatherT

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Posted 06 January 2007 - 02:57 PM

Diffuse here 3/2006! I have just recently started to lose lbs but I think its the not eating 1 hour after meds or 2 hours before meds. I guess I am not as interested in eating as much I as used to be, like most everyone else. It hasn't been drastic but people are starting to notice. I am a steady eddy when it comes to my weight. I have shed maybe 2 pounds in the past...and that was from running a marathon!

I've just started to worry a little about it, because people are noticing. I just started buying a yummy probiotic yogurt drink with calories again. I drank it while pregnant and I heard its good for your digestion. Its very tasty.

Heather