I just tryed posting a little while ago and I don't know if it went through. I just got back from the rhemy today. Last month was my last treatment on Orencia. It worked so well at first and then k-put! I have no idea why. Now again up on the prednisone and staying on the plaqenil. My diagnosis at first was possible Lupus, ?RA, to I don't know, your a difficult case. So I've been on quite a few meds some always helped at first and then no. I'm just so discouraged. I have about 5 more years until I can take early retirement, but I don't know if my body can. It's just so hard to even stay at work when I'm really ill. My labs always come back negative, my medical doctor says she knows it's Lupus. I just need to know what it is. It's so devasting at times as you all know.
By what you've put in your profile of what you've had and suffer which it sounds to me you have Lupus or an autoimmune disease/s but i'm not a doctor to diagnose.
You don't have to have positive ANA/DNA to have either and if your bloods are coming in negative and you do have Lupus it fluctuates blood readings so they can come in false.
Well to be on prednisone which i was offered for the joints and also plaquenil which is given to the skin it's more or less confirmed i'd say because i've got DLE and was on plaquenil for over a year and have now been moved onto a stronger drug plus i've had the butterfly rash like yourself.
They're giving you both drugs to help both points the RA and skin but because your bloods are negative the specialist does'nt want to confirm properly but your doctor does.
Lupus is just one very testing disease daily and can take we to the extreme on some days and finding work hard, is'nt unusual...i know it's devasting as i had ailments from 18 and was only diagnosed 5yrs ago and everything i'd had Lupus had caused, all my bloods came in positive and then i was told it had been inherited.
So your not alone on this one i totally know how your feeling.
Wow, you are lucky, five years until retirement, lucky lady. One good thing is you just have to adjust your expectations for working and define your level of productivity at your job by filing ADA accommodations, when you write the needed work schedule out and the employer will grant it barring "unreasonable hardship" which is very high to prove. This new work schedule for the remaining five years can help you to define your energy level, productivity and expectations of the employer within your job title. Hopefully the next five years will be low energy and helpful for you to be successful.
Has your doctor tested you for any other Rheumatoid Arthritis conditions? Sometimes, Autoimmune conditions mimic one another offering symptoms mimicking Lupus. Suggest other RA problems that may run in your family and those that don't and start searching if its that bad.
Terri xxx