Hello everybody,
I just visited my doctors office Wednesday and I was 115. I rechecked my weight today (just curious) and it was 111! Is this normal for anyone else? I mean my lupus is pretty active, I have slight fevers (99.6-100.3) and the joint pain is unbelievable. I feel like an old man every time I lay down.
My doc did just up my dose of prednisone to 20 not even a week ago. Yet I still am not feeling any better! I am still waiting for the lab results to come back before we make any decisions (he likes to look at the sed rate and number of antibodies). Still, I FEEL the inflammation. I don’t need a lab test to tell me I am sick.
Apart from becoming a night owl and barely getting any sleep until 7 or 8 am, the weight loss is the only other thing scaring me. This happened last time when I was on a dose this high and I lost 20 pounds in two months! Yes on 25 mg of prednisone I lost 20 pounds. Hence why I am concerned.
Has this happened to anyone else?
Hi there, I’m sorry to hear that you are not feeling well- I too have had a ton of weight loss, but also have zero appetite… I thought that it was related to the tapper of the prednisone, but, I have been off of pred for a couple of years now (completely destroyed my bones). I switched Rheumatologist’s & started back on Methotrexate, Cellcept (still on the plaqunil) & am about 1 month into a investigational infusion study for a new medication in stage 3 of FDA approval . I am sure that the meds don’t help the lack of appetite, but, I lost the majority of weight before I started the immunosuppressants (they give me some unpleasant GI issues sometimes). I’m starting to feel better (a few hours of energy during the day compared to no energy what so ever- swelling & pain seems to have moved all to left side again, better than both sides & not being able to write!).
However, I still can not gain weight- I’m down to 106lbs (from a typical usual weight of around 140lbs.) I know that if I could get some healthy nourishment & gain weight, I would have even more energy- so, when can eat, I try to eat foods that are high in healthy fats, natural anti-inflamitory properties & sustaining snacks… My dr has me drinking ensure on days when I can’t get anything in. (I too happen to be somewhat nocternal, so I often manage to get down some midnight ice cream! Yum!).
You may have also heard of “The Lupus Diet” which is where I learned to stay away from certain foods that are known to trigger a flare (alfalfa sprouts) & foods that support wellness for us.
I’m looking forward to getting back to cooking & eating again- as this was a family hobby that I truly miss.
Thank you for posting this topic, would love to see any suggestions as well…
Be well and hoping that you will be feeling better soon!
Hi teenlpus101 I lost 30 lbs in 2 months before I knew I had lupus. I was just diagnosed a month ago. The prednisone I am on 24mg a day and hydroxvchloroquine 400 mg a day did help me but it has been gradual over 3 weeks of increased eating and forcing myself to eat in the beginning. I also find this weight loss un nerving. My weight is stable now. I have not gained any but I am not loosing any either. Fruit and vegetable juicing helped me a lot I could swallow it.
When you’re in pain the last thing you want to do is eat. Eventhough they have increased your prednisone they may need to increase it more. I truly understand the feeling of being an old person with joint issues. To help eliminate some of that pain I take an Epsom salt bath where it helps ease muscle aches. I also purchase bio freeze and Bengay products and wear those to bed and thank goodness they now have odor free ones. Those help me. Also, try drinking boost. Mix it up with ice and make a slushie or ice cream to make a shake. That is what they have given me in hospital before. Good luck.
Hello! I also lose a lot of weight during flare ups even if I am on prednisone and sleeping most of the time. It could also be that because of the intenses pain I also lose my appetite and would rather sleep than eat. I could be on bed rest for two weeks and still lose 10lbs. Be strong! I pray that you get well soon from this flare up.
I tend to loose weight when I flare, remember if you are going to weigh do it at the same time every day and try and wear close to the same thing. I weighed at the doctors and was 186 weighed at home the next morning 184 scales tend to weigh a little different. will be thinking of you
This lupus stuff is no joke! Smile I experienced this last summer, the weight was in all the right places, even though I never had any kind of weight -to start, am a petite built frame , anyways , the weight made me feel very good. My perednisone was taken up to 40 mgs, and it was great for me , but as soon as the doctor took it back down to 20 mgs, the weight went away and I find myself at the doctor visits wondering why each time the weight changes from doctor to doctor . Going through this every 4-6 weeks it is something different from doctor to doctor. So now idon’t care if the weight comes or goes ! Really ! But it really is hard for me to hold weight at any time . But hay ! Lupus has so much for us , til I just go with the flow , hang in there okay!!!..Beverly L.
Thank you all so much for your responses! I am still losing weight (down to 109.5) and I know it is probably due to lack of appetite. I definitely will try to use some of your advice - especially the drinks. I used to drink carnation instant breakfast, perhaps I will try that again or I will buy ensure. My gastroenterologist is not going to be happy with me since I did promise to go get a lactose intolerance test done :x whoops... But I should still probably give him a call as he did make me talk with a nutritionist last time I lost this much weight.
With the weight loss, joint pain, and lack of sleep I will for-sure give my rheumy a call tomorrow. Hopefully I get lucky and the labs will be done by tomorrow. :)
On the bright side, if I do end up on cellcept and lower doses of prednisone perhaps my lupus "fog" will clear up - I have to take the ACT in september.