I have suffered with sjogrens for several years. My mother had it as well. I cannot lose weight. My doctor says most of his patients lose weight with sjogrens. Is there anyone else out there that cannot lose weight?
Hi Cindy, Iv'e not seen any postings that suggest us Sjoggies lose weight because of having Sjogrens!
This is a new one to me.
I personally have put on weight very recently,
probably due to the fact I am in the house more during these days of Winterwhen I tend to snack more...
There are probably times when some of us are going through a bad time,
and that could affect the appetite, so one might lose weight then ,
but on the whole I can't think where your Doctor got this idea from.
Perhaps others could throw something up on this that might help your query, Dolly
Hi Cindy :)
I can't lose weight - and I really have been trying. My weight gain was caused by thyroid problems but it is stabilised now - and I still am not losing weight. It's really disconcerting because I spent most of my life underweight - but no more.
Quite a few people with SjS also suffer thyroid problems. Has yours been checked out?
You are not alone anyway.
Take care - Scottie :)
I think you will get mixed answers on this topic! Some people gain weight due to meds, inactivity, etc., but others become almost anorexic. Digestive problems, for example, can cause loss of appetitie or inability to eat much. It will be interesting to see the responses. (As for me, I tend to keep a pretty constant weight.)
Cheryl
Hi Cindy,
As a teenager I was always very thin. ;D
Then I went on the contraceptive pill and BOOM my weight sky rocketed to amazing hights. I kept it under control by strick dieting, active cycling every day and some other sports. Just when I thought I had stabilized on a normal weight, my thyroid messed things up. For no apparant reason at first, I gained 20 pounds in just 6 weeks... I was also dead tired and extremely cold. Thyroid check proved I had hypothyroidism. (Sjogrens was diagnosed just weeks before).
The meds & the combination of the Atkins diet at first helped greately and I was able to loose about 20 pounds within 6 months. For years I was happy on this, but last year the battle of the bulge had to be fought again.
Probably to the fact that testosterone had been added to my regiment of meds. Testosterone & Atkins are a bad mix. because testosterone binds to fat.... :(
Now I've cut down on the testo and want to start Atkins all over. Besides that I walk the long staircase in my appartement building to the 9th floor, I lift weights every day, bicycle to work & and walk the dog more often... If this doesn't work, well then you can balloon me into the skies! ::) ;D ;D ;D
See how it goes... Take care!
In the past year I have put on weight and blame it on inactivity due to the surgeries I have had in the last year and also the meds.
But now I have really been watching what I eat and trying to walk a couple of miles a day, but no weight lose. I have used the Atkins diet and it work well for me, but now that my kidneys are not functioning well all that protein might not be good for my kidneys. I just got my labs back and they weren't too good.
Since my first flare up last year I have lost two stone. Now I am out of the flare up, my appetite has come back. I am being careful with food now and eating healthily and exercising, so I dont put it back on as I needed to lose the weight in the first place!
Will be interesting to see how things turn out for me, and if appetite loss is part of my symptoms of flare ups or if it was a one-off.
I am on no medications.
Your doctor may have been referring to gastroparesis, which seems to be common with Sjogies. If you Google it I'm sure you'll get a good description of it :)
I'm another one with problems trying to loose weight, and being hypothyroid sure makes things even more difficult (and I was thin until I went hypo in my 30's).
Hang in there, and take care -
Patze
yep, Im stuck at a certain weight and cant lose. it is a blessing that according to the BMI I am only 5 lbs over but its annoying as I eat really healthy, excersis and watch calories. i too was dx hypothyroidism 11 yrs ago and take synthroid- the dr. said that my throid is fine and I just eat too many calories but if I cut back any more I feel weak and grumpy and its not worht it. I uwas always on the thin side till I hit 40 then boom... it all went downhill..... so I cant say the throid is it cause in my thirites I was still thin and could lose when I tried...
Personally, my recent weight gain is multifactoral. Menopause, Prednisolone, lower activity (I used to run 25 miles a week). I do not think Sjs causes weight gain, but someone correct me if I'm wrong. :-\
I have had a weight problem most of my life. I had been a little overweight for a number of years, but after the RA and the drugs I gained over 40 lbs and could not lose it. Part of it was from inactivity. I had a lot of surgeries and knee problems. But a lot of it was from Prednisone, Cymbalta, etc. Then I gained another 35 lbs. Then last fall I started to have a lot more digestive problems. I have reflux and a hiatial hernia. I have to be really careful what I eat. I need soft foods. Anything with seeds or crumbs makes me cough and choke. I stopped eating chips and crackers for the most part. I eat more fruit and vegetables. As a result I lost 40 lbs. It has been very slow coming off. When I have a really bad flare I don't eat much at all and that is when I really lose the weight...........So I look at it as a silver lining.
Jules
I've had weight issues all of my adult life but for the most part, was able to keep my weight within a relatively acceptable range until I hit menopause (with the exception of gaining 55 lbs with my second child and then getting pregnant again when he was only 4 months old ::)). Since then, my excess fat has decided it's very comfortable where it is and refuses to leave. Now - since starting on plaquenil, it has decided it needs some company. I rarely overeat (although I suppose I will this week ;) ) and avoid sweets and simple carbs. I don't go to the gym or anything like that, but I am no couch potato either. We have livestock and I have to do some level of physical exercise at least twice a day. It really annoys me when I tell my doctor that a medication is making me gain weight and they brush it off by suggesting that I'm eating too much. Well, I guess I am - but to lose weight I would have to cut back to the point where I would be hungry all the time and at this point in my life, I just am not motivated to starve myself. Maybe I'll find the motivation in a few months; my daughter is getting married next year and I will need to buy a "mother-of-the-bride" dress! :-\
I am glad to know that I am not the only one that struggles. I have always struggled with my weight. I am on Evoxac and hormones since menopause. My doctor says I would feel better losing the 40 lbs that I am overweight. My thyroid has been tested and it is normal. I don't feel like exercising. I work 50 hours a week and it is all I can do to cook dinner at night. My husband has had to take on most of the household chores since I don't seem to be able to keep up anymore. When I cut back too much on food then the Evoxac seems to make me sick at my stomach.
In the last year I've lost 35 lbs. Haven't changed my eating habits, the doc says it is from Lupus and Sjogrens. ????
I'm 46 years old and for at least 44 of them I have been a tiny, petite person. Often doing all I could to try to gain a few pounds just to look like an adult, even going to doctors who put me on special diets to gain. B U T N O W! I'm headed back to my doctor for him to do something about the 20lbs. I need to lose.
Let's just say I've surely learned the grass is NOT always greener on the other side! I want to go back to being me again, but honestly don't know how to do so. When I wanted to gain I could'nt add a oz. but now I got more than I know what to do with. My frame is too small for the weight.
I'm going from being able to eat anything and as much as I like without thought to gaining to having to think about almost everything. It's too maddening to make sense of. I contribute mine to age, menapause and not being as active as I was.
Bernice
Hi Bernice,
Have you been on the Lexapro for 2 years? That stuff made me gain weight big time.
Before I got pregnant with my son (which apparently triggered the Sjogrens), my average weight was around 130lbs. I gained 26 lbs while pregnant (I watched what I ate and exercised regularly), and lost that within a few weeks of giving birth. I thought I was doing good by losing the weight, but then I started getting sick with Sjogrens and the weight just kept coming off, mostly because I was just too exhausted to even eat. When my son was two I ended up being paralyzed from hypokalemia (sp) from DRTA caused by Sjogrens and when I got out of the hospital I was skin and bones (I'm 5'7 so it was really bad). I was tiny for a while, then put some weight back on and I stabilized at around 130 lbs. again. About 5 or 6 years ago I started on a few different meds all at around the same time: Plaquenil for my Sjogrens, Lexapro to deal with the depression and anxiety from my illness, and Ambien to help me sleep. Since then I have put on 45lbs!!!! I believe there were multiple factors that could have attributed to the weight gain. Lexapro can make you gain weight and it caused my appetite and my desire for carbs to increase. With the Ambien I would get up in the middle of the night and "sleep eat" - I would literally wake up in the morning and find food wrappers and empty chip bags around the bed, sometimes IN the bed. And the Plaquenil caused muscle weakness, which made me become less and less active. I was told AFTER taking it for a few months that Lexapro can cause weight gain and since it first came out Ambien is now saying that it can cause sleep eating and subsequent weight gain. All stuff that would have been nice to know before I started taking it, especially since you can become dependent on them. Because of the muscle weakness and heartburn I quit taking the Plaquenil, and because it seemed like it stopped working (and wasn't worth the weight gain) I quit taking the Lexapro. I am still hooked on the Ambien. I still have not regained a lot of my strength or built back any of the muscle loss, mostly because I am too exhausted after working all day and no longer taking the Plaquenil and can't seem to exercise enough to build anything. I'm lucky if I get little walks in here or there. So, I'm totally struggling with weight now, and it is hard to say whether or not it is from the Sjogrens, the drugs, or my age (I'm having a hard time accepting that I'm ALSO ten years older since being dx, too!). It really does seem, though, that I put on weight very, very easily and I can't seem to take it off. And, of course, the doctor reminds me at every visit that I have put on "a significant amount of weight" since I first started seeing him, and of course it would make me feel better if I got more exercise and lost some of the weight. No problem. As soon as I'm done passing out when I get home from work I'll get up and run a couple of miles! NOT! Well, hang in there. Sounds like you aren't alone in this!
Bernice,
Some of the antidepressants will really put weight on you. I have a friend who takes Wellbutrin because it does not. In fact, you will usually lose a few. Now, I don't know if it would work for you but you might want to check it out.
Anna
I see my rheumatologist in a few weeks and I am going to see if he can give me something for depression. Between feeling so bad and the weight gain I could just cry all the time. He tells me most of his sjogrens patients lose weight. It is almost like he tries to make it like it is my fault for putting on weight. I like everything about him except his attitude toward my weight. He was my mothers doctor. She was his first sjogrens patient. She suffered for 10 years before getting lymphoma. One she had lymphoma her health really went down hill. I have only been married to my husband for 2 years and I know this is not what he signed on for. He is wonderful and tells me not to worry and he loves be no matter how bad I feel. We are constantly having to arrange our life around my illness.
I have been on them (LEXAPRO) since July, but I must admit since reading the responses about it I am not faithfully taking them, it really could be said I am off.
Yall I weigh 132 lbs. at 4 11" Me and my doctor about to have a "Come to Jesus Meeting"
Cindyh,
I feel for you, you and you new honey should be enjoying each other more without so much thought about Sjogrens. But somehow I trust that he really means what he tells you. Girl love is blind and can make one what to withstand most ANYTHING just to be with the one we love. Chile, You just keep your head about yourself and enjoy that good man that loves you and not focus so much on what's missing. ENJOY HIM! ;D ;) ;) ;D
Thanks for the kind words and bit of knowledge. I try to focus on the positive. I am so thankful that we found each other. I don't think I could stand to deal with all of this alone. I am so happy I found this website. It is a comfort to know that others struggle with the daily annoyances of this disease.