Questions & Answers

Hi- if you're open to sharing.. what current medication are you on to control your lupus and what dosage are you taking?

The doctor just put me on prednisone for the 1st time about a week ago but it's not a long term dosage? It's 40mg for 1 week and now I'm down to 20mg for a week- then 10 for a week...

So my whole body has been swelling randomly- my doctor knows this. My legs and feet swelling randomly- the doctor knows this. Tonight my legs and feet are swelling up bad for the first time since the doctor put me on prednisone. I've been on 40mg for 7 days- then today it started to taper me down and I'm taking 20mg for a week. Then it will be 10 for a week... idk what to do? Do I need to tell them the swelling is getting worse ?

I want to try supplements to lose some pounds I’ve gained since I’ve been diagnosed. I don’t want to get too heavy, I know my rheumatologist told me to eat healthy but I feel like that’s not enough for me.

I spent my time yesterday in the hospital thinking I was having a heart attack😳. The pain was really intense and not being able to move without pain made me panic like crazy. Turns out I have costochondritis. Has anyone ever had it and how do you deal with it?

Would anyone like to share something s thar hard for them now more details

I get so much rage and am so irritable when I'm very tired and hurting. I can't seem to control my anger. It really scares my family sometimes. I have been researching lupus psychosis and I'm beginning to think that my lupus is attacking my brain during these times.

When in March my levels were perfect. Now that I am in the height of a massive flare, they are all over the place. I’m in between finding the right combination but the rest of my blood work came back normal besides my Calcium being high. Usually I tend to have high blood cell counts and white blood cell counts but they are normal at the moment. It’s so confusing and frustrating at the moment because my primary doesn’t know as much as my rheumatologist.

The longest I've managed to hold down a job is 18 months- this is due to the miles long list of symptoms I've had in the last several years. I feel like I'm going to be stuck for the rest of my life doing random odd jobs for short bursts. Lupus prevented me from graduating and I have no college degree to get me any better work. Thankful for my husband that I am not in "need" of work- but I'm bored and feel pathetic.

I avoid being out in the sun as much as possible which makes me quite isolated. I wear long loose fitting clothing, suncream reacts with my skin. I currently have small blister type rash on hands, arms, feet and chest and I know from experience it's here to stay until summer is over. This is my first time posting on here