Posted 05 January 2007 - 04:54 AM
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.
Posted 05 January 2007 - 05:17 AM
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.
Posted 05 January 2007 - 05:59 AM
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!
Posted 05 January 2007 - 06:09 AM
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......
Posted 05 January 2007 - 06:11 AM
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
Posted 05 January 2007 - 06:29 AM
Take care, Everyone.
Posted 05 January 2007 - 06:42 AM
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.
Posted 05 January 2007 - 07:11 AM
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!
Posted 05 January 2007 - 08:03 AM
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.
Posted 05 January 2007 - 09:49 AM
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.
Posted 05 January 2007 - 11:17 AM
I'm at the largest weight I've ever been which isn't much but it's depressing. I'm being told itâ€™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.
Iâ€™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 tooâ€¦
If you want a few of my pounds Iâ€™ll send them to you. He He!
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 05 January 2007 - 12:52 PM
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Posted 05 January 2007 - 02:42 PM
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?
Posted 05 January 2007 - 03:22 PM
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.
Posted 05 January 2007 - 04:07 PM
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!
Posted 05 January 2007 - 05:54 PM
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.
Posted 05 January 2007 - 07:28 PM
Posted 06 January 2007 - 02:57 PM
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.