SLE, Anorexia

[Spazy1]

I was diagnosed 8 years ago with SLE. I've had a gradual deterioration since then. I am currently recovering from back to back UTI's and 10 days with the flu. I'm so weak I'm using a walker to get around and so fatigued I can barely take care of myself. I am dealing with severe food aversion. I feel like I have to force myself to eat anything. I've lost 20lbs in the last month. Any thoughts of food make me sick. I'm really struggling with it. My daughter brings food but I just can't seem to eat. In October my new Rheumatologist stopped my Prednisone after 8 years of being on it. I've had a thyroidectomy and adrenal insufficiency since starting Prednisone. I'm going back to my old rheumatologist next week in hopes that he can help me. Any suggestions on how to get calories in would be appreciated.

[Hidden]

Hi,

Do you have secondary Addison's ( you mentioned adrenal insufficiency ) and if so are you on hydrocortisone replacement therapy?

nadf.us/adrenal-diseases/se...

Some of the symptoms you mention including fatigue, weight loss and lack of appetite can be caused by Addison's.

Were you given a short syncathen test when you were taken off prednisolone after 8 yrs?

[Rach459]

Hi has your rheumatolgist recommended fortisip drinks? They are full of all the vitamins and nutrients your body needs aswell as alot of protein. They taste really nice too! They are only small so it would probably be enough for you to stomach unlike the ensure drinks xxx

[katidid]

So sorry to hear about your struggles. This sounds really aweful. I understand the food aversion, for half a year I would only eat like 4 foods. I got really weak (moreso than our normal fatigue) . It was protein deficiency.

For your calories abs nutrients try any kind of supplement food shake. I use Vega whole food supplement. You can buy it online. Too add calories mix in avacado (you won’t taste it) or coconut oil. The fat will give you the extra calories. I like the Carmel and chocolate flavors of the shake.

Most regular markets also sell Ensure and similar. Last stop is ask your doctor for “prescription/Medical food”. I had that about 8 years ago when the inflammation in my gut caused me to go into malabsorption . Again it’s usually a shake powder. But good thing with the shakes, you can just chug them. Three big gulps! No trying to force feed yourself!

My thoughts are with you and I’m giving you a big hug. Having to fight with food and go through everything else is terrible.

(Also, try veggie broth Ramen or noodles?)