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capncrunch
01-29-2012, 09:51 AM
I don't know if this is true, but i saw on the TVB (Chinese Channel) that people with Lupus are usually skinny except for the all the medication that makes them swollen. I'm just curious if you guys are naturally skinny? I don't really know because as an Asian i'm just naturally skinny lol...

SleepyInSeattle
01-29-2012, 10:11 AM
I don't know about this - I hadn't heard it. Autoimmune diseases tend to run in "packs" - often people have more than one, and there are several that affect digestion and gut health (Celiac, Crohn's, Irritable Bowel Syndrome, etc) - and I believe that Lupus itself also sometimes attacks various parts of the digestive system. So it wouldn't surprise me if some people have trouble keeping weight on.

On the other hand, every single case of Lupus is a little different. Personally, I have a cast-iron gut and have never had those particular problems (thank goodness)....I am kind of in the middle of what's considered a "healthy range" for my height, weight-wise. I'd love to lose about 15lbs, but that's just vanity, not really a health issue.

Prednisone can certainly make you gain a lot of weight, and some of the other medications can make you very nauseated so you lose weight. It's hard to say.

Other than fatigue, I'm not sure there's such a thing as a "universal symptom" of this crazy disease!

Hunniebun
01-29-2012, 01:02 PM
I stand 5'3" and I am about 110lbs. I have always been very skinny and it takes a lot of work for me to gain even a few pounds. I am in very nice shape now, nice and slender and I'm proud of it.
I didn't gain much at all when I was on Prednisone, and when I was one Plaquenil, I dropped to an extremely unhealthy below 90lbs because I couldn't eat and all I'd do is throw up, so I hate that drug with a passion.

kim,l
01-29-2012, 04:08 PM
for me it is different i am a very large woman but i have other health issues like athyroid that does not work and and since i was already big before the medication made me bigger. but my mother who also has lupus is super skinny sometimes i think it also to do with your genes my fathers side where big people i inherited that and my brother inherited super skinny gene. i was skinny until i reached about 18 then the weight became issue i am battling with obesity now. and lack of exercise is my main problem because i am on walking frame but i will not give up i will continue my battle to get to healthy weight.

Mica
01-29-2012, 04:41 PM
I depends on the people, mostly how the steroid affects someone. Im 5 foot 115lbs, so im pretty tiny and always have been even on the steroids and the lack of exercise and steroids making me hungrier. So it really depends on what a lupus patient is taking and their genes.

n.mac
01-29-2012, 04:42 PM
I have always been on the heavy side-although I am big boned and having always worked in construction I have always been very muscular.

Lupus has slowed down the amount of physical work I can do and I can feel a difference in muscle tone. And now more than ever I have difficulty keeping my weight down much less losing any of my ample extra weight.

tgal
01-29-2012, 04:50 PM
The answer is no. Not all people with Lupus start out skinny. Just like every other part of this disease weight is an individual thing. Lupus doesn't discriminate against heavy people it hits them just as hard.

magistramarla
01-29-2012, 10:18 PM
Mari is right. Autoimmune diseases can affect anyone - big or small.
I'm like Sleepy - not really overweight, but I could stand to lose 15 - 20 lbs. It really makes me mad when a doc tells me that I would be well if I just lost those pounds.
I would LOVE to exercise, but it's really hard to do that when I can't walk a few feet without my legs spasming, sometimes pulling me to the floor.
Hugs,
Marla

chinadoll
01-30-2012, 08:14 AM
I've never heard of this, but I don't think it makes a lot of sense. As Mari said, Lupus attacks all kinds of people, all races, all sizes. It is, indeed, no respecter of persons. While some gain weight on prednisone, others like me lose weight no matter what we do, simply as part of the disease process. I am 5'2" and my best weight is 110, but I am currently weighing in at 88. So whether you are overweight or under...Lupus is devastating just the same.

lizbond36
01-30-2012, 04:04 PM
I am known as a woman who loves her food LOL, however when I begin my treatment I drop weight without trying. The thought have eating make me sick. I eat like a 4 year old. I can go all day without eating. Reason my fog I forget to eat and I am not hungry..
Hugs
Liz

rob
01-30-2012, 05:51 PM
I'm 6'1" and 200 lbs. Always been big-boned and muscular. I gained weight when I first started on oral pred back when I first got the SLE diagnosis in 04. I tapered off it and eventually lost what I had gained. I started IV Methylprednisolone about a year and a half ago to control the de-myelinating effects of MS, and I've not gained any weight. I could easily start dropping weight though, as I rarely have any real appetite anymore. I have to make myself sit down and eat at times.

My mom has SLE, was diagnosed over 20 years ago, and she's 5'2" and maybe 100 lbs, but she's always been petite, so no real difference with her pre to post SLE diagnosis.

Lupus is strange. No rhyme or reason to it. Add another autoimmune disorder into the mix, and it just gets that much more inconsistent and complicated.

Rob

Larette
01-30-2012, 07:00 PM
Before I started having lupus symptoms I wasn't ever really overweight but did tend to plump up easily. One of the (many) things that began to get me thinking something was wrong was when I started losing quite a bit of weight and wasn't putting it on as easily as I did before. That was over the last 1.5/2 years.

When the dr. gave me a 6 day pred dose pac recently, I gained like 8lbs practically overnight. It has all come off now though. Now that I'm on Plaq (only about a week in) I'm worried that I'll start feeling sick and drop more weight.

For those of you on plaq, when did you start feeling sick to you stomach (if ever)? Did it happen right away or did it start after the med started building up in your system?

Thanks,

rob
01-30-2012, 07:33 PM
For those of you on plaq, when did you start feeling sick to you stomach (if ever)? Did it happen right away or did it start after the med started building up in your system?

For me, it never happened. No stomach problems at all. I've been on plaq for shoot, 8 years now I guess. I take 200mg in the morning, 200mg at night, usually with just a bit of food, like crackers. I've not really had any bad side effects from taking it, even after all this time. I still see an Opthamologist to monitor my eyesight though, better safe than sorry.

Rob

SleepyInSeattle
01-30-2012, 07:46 PM
I'm like Rob - I have not been on it for as long, but the only time I have ever even noticed that I took it at all was a couple times I took it on an empty stomach....and it did make me kinda nauseated. But I can have it with just a handfull of peanuts or whatever and be fine. They could be sugar pills for all I can tell.

They do taste NASTY, though, if you hold them in your mouth for too long. Yuck....super-bitter!!!!! :-P

But I know some people have VERY strong reactions to it and it makes them really sick.

Oh - be careful not to take it with any antacids or a calcium supplement - they prevent your body from absorbing the plaquenil. Actually, that's true of a lot of medications. Just FYI....

rob
01-30-2012, 09:02 PM
They do taste NASTY, though, if you hold them in your mouth for too long. Yuck....super-bitter!!!!! :-P

And it's the kind of bitter that you can still taste a couple of hours later. Beyond nasty. Have a drink of water ready to go, and chug it down fast.

steve.b
01-30-2012, 09:59 PM
and i of course am abnormal.

i have no adverse reaction to plaquenil.
i do not get the bitter aftertaste that others are commenting about.

i am happy to take plaquenil.

ruziska
01-30-2012, 10:17 PM
DON'T I WISH! Lupus=skinny. Now that's a fantasy if ever there was

tgal
01-31-2012, 09:59 AM
No negative side effects to plaquenil at all from me. For the first 3 or 4 months I thought I was wasting my money and then one day I woke up and found my rashes hadn't been there in a long time. It is slow working but I would have taken small side effects for the positive results. I came off of them once and am still paying for it.

Nutmeghers
01-31-2012, 07:40 PM
I was skinny before I started treatment. Part of that was because I didn't have the energy to cook for myself. The other reason was that when I did eat I struggled to keep food down due to stomach inflammation. A few years of prednisone, and being less active has led to me now being overweight.

magistramarla
01-31-2012, 11:09 PM
When I first started taking Plaquenil, it gave me the trots. That lasted for a few weeks, until my body got used to it. Now that I've been taking it for nearly three years, I never have a problem with it. I only take one pill (200 mg) in the morning with breakfast.
Hugs,
Marla

thepaynes
02-09-2012, 12:21 AM
o my i used to be skinny n athletic in school. but after getting diagnosed with sle n being on pred n developing fibromyalgia raynauds sjogrens and now horrible perphial neuropathy my pred has been increased over the years. as did my weight .they say that marriage gains u weight too. lol but i feel like i dont recognize myself anymore. ive gained from being sore achey no energy and having a low income.sadly it costs more to eat healthy. its hard to exercise n eat right. but i try. i encourage myself saying well i could be bigger if i wasnt trying. i went from a 10-22 tho. i do have a goal to get to 18 for the summer maybe 16 who knows. sure wish i had a buddy system to help me ou thot. but alot of this weight is swelling with fluid n lupus fatty deposits which gives this lovely moon face. so i was tiny vbefore pred. but im told i carry my weight well so im going to look at that positive light.-be blessed ps but i must end on a positive not. i have no internal involvement praise God!

bunny28
02-09-2012, 10:18 AM
My guess is that you just can;t make sweeping generalizations about a disease that affects people so differently. I have wondered at times if lupus was affecting my thyroid for example. The thyroid gland and its function have a definite relationship to body mass and size. So if lupus were affecting it one way or the other, you could be skinny or overweight depending on if you were exhibiting hypo or hyper thyroidism.

ashleybaby715
02-12-2012, 09:44 PM
prior to my lupus diagnosis, i was 98 lbs. never changed. then when i first got sick, i dropped to 83 pounds. THEN i went on 40mg prednisone and jumped to 116 in two weeks. thats the biggest i've ever been in my life. now i'm 103 pounds, 5ft3 and i'm 19 years old. my weight has fluctuated a little bit because i had to go on a higher dose of steriods for a little bit... so it went to like 108. but now i'm back at 5 mg's and i'm back at 103 pounds.
i guess i just have a fast metabolism

bunny28
02-14-2012, 12:30 PM
Oh - be careful not to take it with any antacids or a calcium supplement - they prevent your body from absorbing the plaquenil. Actually, that's true of a lot of medications. Just FYI....

See that's one of my problems. I take an acid reducer daily and would love (and mostly do) for simplicity's sake take my meds at about 1/2 hour before breakfast, supper and then bed time. Plaquinil before Breaky and supper....so when do I take my acid reducer meds. I used to take them at bedtime but someone suggested am when I was still getting symptoms...which means I am taking them with plaquinil, etc, etc.

Oh well, if things seem to be working, I will stick with that.