My story (sorry so lengthy)
Thanks guys, it does help to know there are others out there that do understand...
I was dxd (finally) approx 9 years ago, six mos after my second marriage w/a three yr old son in tow. I was on plaquenil, which did nothing for me and was switched to quinicrine, NSAIDS, prednisone and celebrex, which did fine for a few years...Then I started dropping things, tripping, then tremors, slowly in my right hand, then both hands, my head & neck, I shuffled my feet, I couldn't walk w/out a cane or assist. I couldn't drive. I was only 36 yrs old w/a 5 yr old son, OMG! After many tests & scans it was determined lupus had crossed the blood-brain barrier - I had lupus cerebritis. I looked like I had parkinsons, and learned the world can be soo unkind w/strange looks & comments. BTW, John's Hopkins didn't even know what to do w/me.
I went through 2 1/2 years of chemo and high steroid doses via IV. My Rheumy is the greatest - will never leave her. She brought me through and by the grace of God, you cannot tell I ever had such an episode. The only residual is being post menopausal by age 40.
I finished nursing school, became a nurse have been working for about 4 years - not w/out ups and downs - I work a few weeks, get sick for a month, its a vicious cycle.
I catch weird things too, that no one else has in my house, shingles & chicken pox 3 times in 2 years, staph infections, chronic sinusitis & bronchitis and I have asthma.
It seems like the infections are coming more frequently and I am developing food allergies to things I have always eaten - very scary. The fevers, night sweats, "sausage fingers", mouth lesions, blurred vision,lupus headaches and fog are coming back harder than before. I usually try to work or keep busy to "outrun" it, now that I am down (my docs won't release me back to work yet) I wonder am I making this up or do I really feel this way?
Has anyone developed new allergies upon being dxd? How 'bout chronic sinusitis/bronchitis?
Now for maintenance I am only on Quinicrine, Effexor, OTC NSAIDS, Allegra, Advair, Proventil and have started taking many Vitamins. I am on a short dose of prednisone and 2 ABTs (clindamycin & augmentin) for 2 weeks.