massive weight loss, anyone else? how do you deal with it?

I was diagnosed in October and was the same as you, 5'4 and 130, but my weight has stayed about the same. I've dropped a couple of pounds, but I think that is just me making healthier food choices now that I know I have Lupus. I've heard of people losing weight on Plaquenil...are you on that?

Hi daniJav,

the year before my diagnosis, I also lost about 20 pounds and was 100lbs at 5'6". I really looked anorexic. I know what you're dealing with. It's not good.

Turned out I had chronic anemia which was causing my weight loss. I could eat like a trucker with no weight gain whatsoever, in fact I lost weight even though I was eating so much. Have you had your blood checked lately? Lupus can cause anemia.

I have 2 protein shakes every day! 80g of protein, and my body loves it!!! The rule of thumb for protein (in any form) is 1gram for every pound you weigh. Talk to your doc about your options.

I hope you get some answers and some weight gain soon!!!

Ginny

Hi DaniJav,

I was dx with Celiac disease a year after losing 40 lbs in 2 months. However, after going gluten free I continued to have GI symptoms, a year later I lost another 20 lbs or so. I got down to 118 and I'm also 5' 6". It was only after seeing my rheumy and starting Imuran I was able to gain a few pounds back. I too could eat anything I wanted of course with my GI symptoms my diet was still very limited but I could eat the HUGE Hershey's bars daily without gaining a pound.

This is something your rheumy needs to know about. Please keep us posted on how you are doing. Take care

Hi

I'd say getting your weight up was of more concern at the moment than the possibility of protein making your lupus worse. Being underweight, which might mean malnourished, can itself have serious medical consequences that could in turn worsen your lupus. We need to do our best to maintain our general health to help our bodies overcome the lupus. Anyway, you are very unhappy about it and emotional wellbeing is important too.There are lots of possible causes for weight loss: it might have nothing to do with lupus or be in additon to the lupus. Most of us need a GP because we can't go to the rheumy every time we feel unwell. So I suggest seeing your GP if you have one or getting one if you haven't. That way you can start a serious investigation into the weight loss. The fact that the weight loss started after your diagnosis would suggest that it isn't mainly the lupus. I have heard people say that Plaquenil reduced their appetite but mostly they were happy to lose some surplus weight. Your previous weight was just fine. Presumably the Plaquenil isn't causing you serious gastric upset like vomiting or diarrhea.

I suggest you start keeping a record of exactly what and how much you are eating and drinking and when. Any doctor or dietician will want to see a record. Put everything down. Keep a note too of your appetite, for instance do you feel hungry when you start eating but feel full quickly. Do you ever experience any swallowing difficulties, or heartburn. You should also keep a not of any abnormal BMs - constipation for instance.

You can start at once by making sure you eat often at regular intervals say every couple of hours. This needs forward planning to make sure you have suitable food to hand. The basic strategy is to eat everything that people who are on a diet would be avoiding. Protein does not have to be meat. It can be fish and eggs not to mention nuts and pulses , the sorts of 'second class' protein sources that vegetarians use. We are often recommended to avoid animal fats which includes dairy fats but I wouldn't worry about that if I was in your present situation. Dairy fats are high calory food and that's what you need - more calories than energy expended. The avoidance of animal fats is as much for cardiovascular health as anything else but undernourishment can affect the heart since it is a muscle. At first as I say I wouldn't worry about it if you like those foods - the main thing is to stop further weight loss and then put on a few pounds. A friend of mine had a serious weight loss problem - she loved being able to pile on the cream thick spread the butter and all that.

Sometimes smoothies and milk shakes are highly acceptable when actual food isn't tempting and things like fruit bars, raisins, nuts plus a banana can make very acceptable light meals. I would also cut down as much as possible on sodas and reduce caffeine intake or anything that's mainly sugar.

I am sorry you had trouble with that rheumy - do get the test results because then you'll know exactly what has been done.

All the best

BB


Always consult your physician.

what kind of doctor would i see for that? i have had lower abdomin pain for a while but my gyn went in and looked around and just saw inflimation. i have had many ultrasounds to see what else could be causing the lower abdomin pain but everything came up normal. i just say my gyn for pain during intercorse and he said that my cervix and female parts inside are still inflamed so he said that my pain is from that.

I have this same problem. I am about 5-5 and weighed around 125. Over the past year I lost a huge amount of weight, I was down to 111 and have managed to gain in the last four months about 4 pounds. I can't get past 115 pounds. I feel horrible, I look horrible, I am skin and bones and my veins are all popped out. I do have Thryoid disease, Irritable Bowel Syndrome, possible Raynaurds syndrome and I know that it is a combination of all of these conditions. I just wish I could get up to even 120, I know I would feel better at that weight.  I drink Ensure every day and eat as much as possible, but just can't get it back.

I have no suggestions on how to gain weight, I just wish I could get feeling better. Hopefully you can gain some weight back too.

Connie

I have had totally normal blood pressure. Its real strange, I am cuttin glucose out of my diet to see if that will help me, maybe it will help my muscle pain also.

That is so crazy that you mention that because my roummy just put me on cymbalta! I get some pain in the sides of my knees but it is mainly in my legs, its the muscle and it is driving me nuts....do you know how long it takes to see any kind of relief from cymbilta?

I would just be so very very grateful to not hurt, When I went in to get steroids about a week or so ago my roummy ran some tests prob checking for that pos ana again to confirm its lupus flare and then tested something with my muscles. All that prob came back neg cuz they just called my rx in when i called and told her nurse that my pain hasnt improved even on the steroids.
I pray to god every day that my pain will improve so im hopping to see some kind of improvment as soon as possible, its all we can do! Ill deff keep yall posted on what she tells me......everything happens for a reason......I do wish that my lupus would make better friends tho...

I have not found out what is causing my pain yet, Im in the process of moving so i have not been able to see my doctor. I tried cutting gluten out of my diet and it did not seem to really change anything. Maybe you should just cut down on you gluten intake and see if that helps. Im going to be seeing a doctor in the next few weeks, if I hear anything i will deff let you know.