Don't think I can financially afford to have this disease!
Hi from San Francisco!
So glad I found this site. I'm 37, single, and a month and 1/2 ago, I was as healthy as can be!
Since then, I have been diagnosed with Stage 4 (?) Lupus, and have so many questions!
I started with the joint pain, low fever, then swollen joints, face rash. Within days, this moved on to difficulty breathing, chest congestion, sore throat, extreme fatigue. I was prescribed prednisone, which seemed to create more problems for me - constant headaches, tinnitus and edema (gained 25 lbs in 7 days!). Joint pain changed to muscle pain. My thumb has been numb for 3 weeks now and every 30 minutes or so a tingling sensation goes up and down my right arm.
Creatinine level went up to 1.6 - had a kidney biopsy. Now I am completely anemic and have high blood pressure!
I've been taking 40 mg Prednisone for almost 2 months (isn't this too long to be on steroids?)
1000 mg of CellCept (for3 weeks)
400 mg of Plaquinell (for 6 weeks)
When does this medicine start kicking in?
1. How many stages of lupus are there?
2. Do you feel overmedicated/ over prescribed? How many different drugs can they pile on? Do they all work together?
3. Has anyone had any luck with any natural remedies/alternatives?
I feel like my doctors only prescribe medication and don't tell me to eat differently - which I find odd. Wouldn't this go hand in hand?
4. Besides a full medical disability from work, is there any financial support / public grants for lupus?
5. Would you recommend an anti-inflammatory diet that makes you feel better during a flare? I seem to puff up (edema) every afternoon and I'm not sure if it's my diet or not.
6. Has anyone had any luck with acupuncture?
Everyone tells me to lower stress levels, but as the medical bills are rolling in, it's tough. I have insurance, but since I only used to go to the doctor annually, I don't have the best coverage! I learned the hard way about out of network doctors, and what's covered and what's not. If I have to live with this for the rest of my life, it won't take long to be completely broke!
It's really nice to have someone to chat with and ask these questions.