Quantcast

Life With Lupus

New member, Finally diagnosed-What to expect?


#1

I have been on medications now for 9 months! My rheumy started me on Plaquenil on my first appointment! I have years of documented symptoms that were misdiagnosed! My first ANA was only 1:80 speckled. I had positive antiphospholipids x2. Almost positive RA! He treated me because, I had blood and protein in my urine. Pericarditis and a pericardial effusion and history of much lung involvement, Raynauds while in his office and a lupus rash.Newly diagnosed congestive heart failure and nodules in my lungs! 11/12 criteria needed for diagnosis. Within three months of starting the plaquenil, he added on methotrexate, folate acid, 800mg of motrin three times a day and a dose pak of steriods due to a flair. This appointment he doubled the methotrexate and added daily prednisone 20mgs. I’ve been having severe joint swelling, fevers, ulcers, skin rashes, pericarditis, hematuria and, headaches. Ive now been on medications for lupus and 13 other medications to treat the damage the lupus already caused! My antibodies are now climbing?? My double stranded DNA is up high so, this is why he increased the methotrexate and added daily prednisone! Why are they increasing now that Im on medications?
Do you continue to have bad flairs even on medications?
How do you know that your in a remission?
Something hurts even when its a good day! Is this a normal for lupus or is this because I’m not medicated enough?
I honestly don’t know when or what to report to the doctor now or wait until the following appointment?
Could someone explain, What I can expect and is this normal?
Does the fatique improve and memory issues?
Thank you!