How effective are the medicines you’re on?
The medications help but they have their own side effects which can be deadly sometimes. But the benefits outweigh the risks. I have been on prednisone on and off since I was about 21. Eventually you feel like you’re always popping pills which don’t make you better, but give you stomach problems. All in all it’s not all bad.
I’m not on too any meds — six or seven — just the main ones. I think I’ve tried all the ones out there. I am currently on prednisone, Imuran, plaquenil and a few others to manage symptoms like vertigo which comes and goes.
Recently, I started medication to control the Raynauds syndrome — another condition that accompanies Lupus. It causes my fingers and toes to feel numb and cold in response to temperature and stress, limiting blood circulation. Basically they turn blue, which over time can lead to tissue damage and even amputation if untreated.
A few years back a new drug Benlysta to treat lupus was approved, I cannot begin to imagine the hope and elation in the lupus community.
We were all excited. My Doctor started me on the infusions and frankly I felt like a new person — I was no longer tired all the time, I felt amazing. Although the infusions were unpleasant, I began to think I had my life back. The side effects brazenly said death, but I didn’t care I was feeling better. Unfortunately it didn’t seem to work so well in people of our ethnicity, and I was no exception. I started to get these small infections and occasional fevers to the point where my doctor felt it wasn’t worth the risk. So they took me off it. But before then, for those few months I was Felicia again, not a person with Lupus. I still hope I can get back on it sometime in the future but with better results.
Besides prescription medications, what other measures do you take?
One of the things that has helped me is watching my diet. I try to eat all natural. I don’t always do it, but I realize some things are more in sync with good health and a healthy diet is one of them. I take my vitamins and I avoid people who are sick like the plague ( no offense).
With a suppressed immune system, lupus sufferers are very susceptible to infections. Felicia takes no chances.
If I’m standing in line at the supermarket and the Cashier coughs once, I leave the line, even if it means a longer line somewhere else. I assume that everyone carrying germs is a threat. Even my husband has become hyper aware to the point he will ask someone, to step away from me if they are coughing. We use a lot of hand sanitizer, we wash our hands constantly and we don’t take chances with colds and flus. I’ve managed not to catch a cold or flu these past years because I am acutely aware of how a simple infection can get out of control and end my life. Sounds paranoid, that’s because it is, but I don’t have the luxury of taking chances.
Rest and Relaxation is also part of her regimen
I try to rest. I schedule my time and I try not to take on more than I can handle. I avoid stressful people and situations. I try to make my life as calm and stress free as possible.
She follows doctors orders to a T
I take my meds and I keep my doctors appointments, every single one. I have good doctors. They take everything I say seriously, so I’m not afraid to mention even the smallest changes in my body. Together lupus doesn’t stand a chance, we’re too vigilant.