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Posted 9/24/2008 1:49 PM (GMT 0)
Just curious if anyone started to lose weight after when symptoms first started? I don't think my eating habits have changes, but I am slowly losing weight and having trouble gaining it back.
I guess it could also be the plaquenil (starting taking it about 2 weeks ago)

Any thoughts?
Posted 9/24/2008 3:10 PM (GMT 0)
Hi Leigh,

 

It's quite common to experience weight loss.  I had chronic anemia about 2 years before my diagnosis. I lost a lot of weight. I looked anorexic actually, but ate like a pig.  The lupus was attacking my blood, causing the anemia.  As soon as I got diagnosed and started treatment, I gained the weight back.  In spades unfortunately.....

 

What are you taking for medication right now besides the plaquenil?  If you're losing weight and on prednisone, that would be something to bring up with your rheumy. That shouldn't be happening. I have no experience with plaqenil and its side effects. But someone here will know for sure if that's what it is. 

 

I do know that plaq takes many months to kick in, so that might be why you're still losing weight too? 

Posted 9/24/2008 4:13 PM (GMT 0)

I lost weight when the flare started this time, and kept losing for a little while after I started plaquenil.  but now I seem to have leveled off.  Maybe because the plaquenil is working.  I hope so.

Hopefully plaquenil will start working for you soon, and the weight loss will stop, if this is the cause of your weight loss.

Hester

Posted 9/24/2008 5:00 PM (GMT 0)

I lost 14 pounds the first three weeks on 15 mg of prednisone.  Very rare.  But my dr scared me to death with stories of moon face and a big belly if I didn't completely eliminate all sugar.  I did it and lost weight instead of gaining.  Evidently I consumed a lot of sugar in my pre-diagnosis days. wink

I take plaquenil, too, but you know it doesn't kick in for 6 weeks to 6 months!  I think mine took the whole six months.  I'm unaware of any connection to plaquenil and weight loss.

Posted 9/24/2008 5:22 PM (GMT 0)
I lost about 30 lbs over 4 months during my flare. I have gained back some of it. not that I want to gain it back, but I was alarmed that I had lost so much weight, when I was lying in bed most of that time. I wasn't eating much though, so I tried to make sure what I ate was good. everytime I ate small amounts of food I felt over stuffed, like I over ate. not sure why though. Now I still can't eat too much, but I am now craving junk. anything gooey and sweet. I've been buying dates to try to fill that craving without eating junk!
Posted 9/24/2008 5:31 PM (GMT 0)
Thank everyone for your responses. My symptoms came full force about 2 months ago, and since that time I have lost about 5 pounds (which is a lot for me- currently weigh 121).
I do have a question about flares......is it normal to have slight joint pain/swelling (in 2-3 different joints) if the flare is over? Does this mean the flare is still lingering?
Posted 9/24/2008 6:00 PM (GMT 0)
Leigh, I always have some joint pain even when I am not flaring. It can be hard sometimes to tell when you are flaring and when you are not and I think a lot of people struggle with that. Over time, you'll get a better sense of when you are having a flare and when you are coming out of it. For me, a flare is when all my symptoms get really bad and symptoms come back that I hadn't had. I rarely feel "good" anymore like before I was sick, but I have a new definition of "good days" now. Good days are when my pain and fatigue are more manageable and I can still do things and go to my kids' activities.
Posted 9/24/2008 6:25 PM (GMT 0)
Thank Hippimom-

Another question...have you heard of someone's symptoms coming from nowhere and strong?
Posted 9/25/2008 3:12 PM (GMT 0)
I've heard of people whose symptoms came on pretty suddenly and they got sick in a very short amount of time and also people like me whose symptoms came on gradually over time. Did your symptoms come on strong very quickly or was it more gradual? When I first started getting sick, I just thought I had a flu that I was having a hard time shaking off. It took a while for me and my doc to figure out something else was going on.
Posted 9/25/2008 5:24 PM (GMT 0)
HippiMom

My symptoms came on very fast, and only about 2 months ago. I started to take Zyban (Wellbutrin) to quit smoking and from that day on symptoms started to appear, starting with fatigue. I thought it was the pill, so I stopped taking it after the 4th day. Two days later a few of my joints were inflamed, but I really didn't think anything of it. The next day I was at the pool and within 4 hours, almost every joint was painful/inflamed and I had a slight fever. I ran to the doctor that day. I have never experienced anything like that in my life. Since then I have developed photosensitivity, muscle aches, and now I think Raynauds........all within 2 months. My rheumy said exactly what you said...some people develop over time and some get hit all at once with the symptoms. I saw him yesterday and he said that my case is mild (for now), so he started me on plaquenil about 2 weeks to avoid any complications down the line. He is also looking into possible Sjogren's (which I believe my mother had) b/c I tested positive for the Anti-SS tests (in addition to ANA and anti-DNA)

Did you always have the dry eye/mouth symptoms? Mine come and go, so I'm not sure if that is normal or not.
Posted 9/25/2008 7:12 PM (GMT 0)
Leigh I went to bed one night and felt perfectly fine in fact was on my treadmill and woke up with severe joint pain full body and 104 fever. Went to the Dr had a blood test and my ANA was a very high positive.I had a physcial 6 weeks before I got sick and was my labs were excellent this time they were awful. I can say I pretty much got sick over night. And had a dx in 3 weeks so for me it was VERY quick it was about 22 days from symptomst to dx. I am glad I got so sick so fast as it led dr's to react right away and led me to the treatment path I chose and now to being basically better.
Posted 9/25/2008 8:21 PM (GMT 0)
Canuckgirl-

We definitely have the same situation- I was dx in 3-4 weeks as well and my rhumy immediately prescribed me plaquenil.
Did you also test positive for Anti-DNA/SS? What were your other symptoms that came on so quickly?

-Leigh
Posted 9/26/2008 2:49 AM (GMT 0)
My dry eyes and dry mouth were something that developed later - probably 6 months to a year after my first symptoms started and it was probably another few months before my doc diagnosed Sjogrens.
Posted 9/26/2008 2:54 PM (GMT 0)
Leigh I had positive high Anti RNP not DNA/SS I had severe muscle pain and joint pain bright red knuckles and felt like my calf muscles ran a marathon but I didn't.I couldn't walk most days and would use the wall to drag myself to the washroom I couldn't have a bath and only could shower as I couldn't get in and out of the tub my hands were so bad I couldn't hold a toothbrush or do my own bra up.  I also had dry eyes and dry mouth I had rayanuads and violet broken capillaries I had a high ANA of 1:2560 I still have some fatigue.


Angela
Posted 9/27/2008 12:35 AM (GMT 0)
I have a hard time gaining weight, in fact I lost 20 pounds in a little under two months. I also have thyroid disease and I know that causes my weight to fluctuate. This is the most I have lost in a long time and I am having a hard time gaining it back. I am slowly getting there though, I am up to 117 now.

This week I have been feeling really rough. I have been fevered off and on all week and just feel crummy. I am having a hard time with constipation again and I noticed that the weight I had gained back over the last two weeks I have lost again.

Uggh, I hate being sick.

I don't know what to tell you other then I have lost weight too and don't know why.

Good luck on gaining it back.

Connie
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