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

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daniJav
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Date Joined Jan 2010
Total Posts : 82
   Posted 1/10/2010 11:11 AM (GMT -7)   
In sept when i learned I had lupus i was about 130, Now i am about 100 lbs and i am 5 foot 4. I went from a size 5 to 0. I have a hard time finding pants that will fit. It is painful and I do not know if it is the weight loss or the lupus. My doctors checked my thyroid and everything and even my roummy doesnt know what to do. has anyone else had this issue?? what did you do to gain weight?

ebet24
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Date Joined Jan 2010
Total Posts : 42
   Posted 1/10/2010 12:03 PM (GMT -7)   
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?

daniJav
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Date Joined Jan 2010
Total Posts : 82
   Posted 1/10/2010 4:10 PM (GMT -7)   
oh my, yes I am on Plaquenil. But my weight loss was increasing before I started the meds and has continued. It is so uncomfortable, my ribs are showing, I cant lay on my sides because it hurts my hips, I cant lay on my belly because it hurts my ribs. I cant even take a hot bath with out hurting because my tail bone sticks out so much, it is very painful. I hate it, I have tried to eat more healthy but it doesnt seem to be helping my weight loss although it is helping my lupus a little. I have been thinking about protine shakes but I think to much protine can be bad for lupus. It is a never ending circle!!!!!!!

Ginny
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   Posted 1/10/2010 4:32 PM (GMT -7)   
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

nasalady
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   Posted 1/10/2010 5:34 PM (GMT -7)   
Have you been tested for celiac disease or non-celiac gluten sensitivity? Either can cause rapid weight loss. You can even check yourself for gluten sensitivity by just going gluten free for two weeks and then going back on gluten. If you feel good when off gluten and feel bad when you start eating it again, you know you have to avoid gluten!

I do hope you find your answers!!
(((hugs)))
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

PENDING DX: Lyme disease?? Lyme ELISA positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


jhmom
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Date Joined Oct 2004
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   Posted 1/10/2010 6:12 PM (GMT -7)   
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. turn

This is something your rheumy needs to know about. Please keep us posted on how you are doing. Take care
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


daniJav
Regular Member


Date Joined Jan 2010
Total Posts : 82
   Posted 1/10/2010 8:54 PM (GMT -7)   
I spoke to my roummy about it the first time I meet with her, she took 10 viles of blood and said that she was going to try and see what is causing the weight loss but hasnt told me anything yet, she said that all my blood work was fine except some protine in my urine. Ill ask about those when I get my new roummy, I had to switch when mine yelled at me.

BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 1/11/2010 3:57 AM (GMT -7)   
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.

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 1/11/2010 9:48 AM (GMT -7)   
Hi again,

Just a quick note to tell you that IF you do have celiac disease, you may have trouble with dairy foods until your intestines heal.

Gluten (from wheat, barley or rye) causes an autoimmune reaction which damages the tiny villi that line your intestines. The villi are responsible for absorbing the nutrients from foods, and there is a special area on the tip of each villus that produces the enzyme which allows you to eat dairy foods. So if your villi are badly damaged, they may need to heal for a few months before you can eat dairy again.

Good luck!
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, lupus, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Raynaud's syndrome, hypertension, osteopenia, sleep apnea, restless leg syndrome, GERD.

Latest Dx: Lyme disease!! Lyme ELISA and Western Blot IgM/IgG Positive!

Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Darvon, Levothyroxine, Atenolol, Cozaar, Mirapex, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP


autoimmunediseasesgfliving.blogspot.com


daniJav
Regular Member


Date Joined Jan 2010
Total Posts : 82
   Posted 1/11/2010 12:19 PM (GMT -7)   
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.

smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 1/11/2010 7:41 PM (GMT -7)   
I have this problem too. I was about 125, I am 5-4 and have lost a lot of weight. I am down 2 sizes and I just can't gain it back. There is nothing left to me, no butt, no boobs, all skin and bones and my veins are popped out. I look horrible  and I feel horrible.
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA,IBS (Irritable Bowel Syndrome) Acid Reflux,
Taking Plaquenell, Folic Acid, Synthroid,Nexium, Singulair,extra Strength tylenol when needed,and Zytram.


smokeyswife
Regular Member


Date Joined Oct 2006
Total Posts : 281
   Posted 1/11/2010 7:48 PM (GMT -7)   
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
 
 
 
 
diagnosed with RSD in March of /03, diagnosed with Lupus in Sept./06.Thyroid Disease ,RA,IBS (Irritable Bowel Syndrome) Acid Reflux,
Taking Plaquenell, Folic Acid, Synthroid,Nexium, Singulair,extra Strength tylenol when needed,and Zytram.


AmyTx
Regular Member


Date Joined Dec 2006
Total Posts : 185
   Posted 1/12/2010 1:56 AM (GMT -7)   
when i was spilling alot of protein i lost a bunch of weigh..like 45 pounds..if this is the case hopefully they can get to the bottom of it.. have you had blood pressure issues lately too>
Female: 38 yrs/old DX: Lupus (dx:'03) MCTD, Raynaud's, Antithyroid antibodies, Lupus Cebritis, Lupus CNS, Lupus Pneumonitis and Stage 3 & 5 Lupus Nephritis. 9 tia's and one pontine stroke,Seizures, Photosensitivity since childhood, vasculitis, left thumb and toe amputated from raynauds, Sjogren's
Meds: Plaquenil,Prednisone 30 Mg/Day,Miracle mouthwash,Xanax, Darvocet, Xopenex inhaler, Xopenex Nebulizer, Spiriva, prevacid, aspirin 325mg


daniJav
Regular Member


Date Joined Jan 2010
Total Posts : 82
   Posted 1/12/2010 9:11 AM (GMT -7)   
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.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/12/2010 8:22 PM (GMT -7)   
Hi dani,

When you say you're having muscle pain, is it pain all over in places that aren't joints? True muscle pain? I'm just looking over your other symptoms and I'm wondering if your rheumy should do a physical exam for Fibromyalgia. When my Fibro is flaring, I get severe muscle pain, and I'm cold all the time. (just read your other topic). I also have issues with abdominal pain, irritable bowel symptoms, and sex is really painful. (soft tissue pain from Fibro). Just thinking out loud for ya here!

You can have Lupus and Fibromyalgia together. They present very similar symptoms, but with Fibro, there is no blood test to diagnose it. Only a physical exam to see if you have specific "tender points". Here is a link to explain Fibromyalgia. I know this is hard to live with. We're here for you!

Blessings,
Ginny

http://www.fmnetnews.com/basics-symptoms.php

daniJav
Regular Member


Date Joined Jan 2010
Total Posts : 82
   Posted 1/12/2010 9:24 PM (GMT -7)   
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?

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/12/2010 9:29 PM (GMT -7)   
I wonder if they're thinking along the same lines! Hmmmmm! I haven't been on cymbalta, but I was on Elavil for my fibro pain. Actually, there are many anti-depresants that if taken in very small doses, will help with pain. It's quite interesting. As far as I know, most anti-d's take a couple of weeks to kick in for pain reduction. But who knows, maybe you'll see it quicker!

Keep us posted!

daniJav
Regular Member


Date Joined Jan 2010
Total Posts : 82
   Posted 1/12/2010 9:45 PM (GMT -7)   
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...

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 1/19/2010 8:30 AM (GMT -7)   
Hi danijav,
 
This is a bit of an older post, but I'm wondering if you have found the cause of your weight loss and pain? I also have been having pain on my lower right side, that even tops my joint pain from RA, it has been so painful.  My gp also had the u/s done plus a ct scan done with contrast and nothing could be found.  I've also lost 10lbs and I'm now down to 96lbs. My blood pressure is either too high or too low, it keeps going up and down, and the nurse commented on how pale I looked.  I know that it is frustrating to hurt and nothing can really be found to be wrong!  At this point I'm starting to feel like a hypochondriach! But I know I'm not imagining it, and I came across your post of weight loss, pain etc and I thought maybe you had found an answer.
 
 
 
Someone mentioned gluten? The day I drank the two bottles of contrast it stated on the bottles that they contained gluten. By the time I reached the hospital my stomach was terribly upset and I was visiting the bathroom, they had to wait on me.  I spent the rest of my morning and early afternoon the same way. I'm not sure if it was just the contrast shakes themselves, since I have GP and the lab tech said most of it was still in my stomach, or if the gluten that it contained made me sick.
 
I hope the cymbalta works for you.

daniJav
Regular Member


Date Joined Jan 2010
Total Posts : 82
   Posted 1/19/2010 12:10 PM (GMT -7)   
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.
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