i am new to the boards and am wondering if I can find anyone that has shared my symptoms in hopes of a successful treatment plan.
I have been sick for 8 years. It started with chronic fatigue, low grade fever, swollen neck glands, slight sun sensitivity and pain in the small bones of my hands and feet. Two and a half years ago (5.5 years after above symptoms started) other things started in like iritis, sever sun sensitivity (rashes and hives on exposed areas and swollen fingers), dizziness, nausea, tachycardia, chest pain, hair loss, nose and mouth ulcers, horrific headaches and Raynaud's. High CRP was the only abnormality. I started MTX and the CRP went to normal. Now I have high CRP and Low C4, my red blood cells and platelets are dropping but normal. I have also had bone erosion and have symmetrical hand, foot, ankle, wrist, finger involvement, horrible stiffness and synovial thickening. I have had every lab under the sun for communicable disease, fungal, bacterial etc, even spinal puncture. I barely function anymore. I just received a diagnosis of Seronegative RA but can not go into the sun due getting rashes and ulcers on the roof of my mouth, extreme fatigue and vomiting. I am allergic to plaquenil. I have taken NSAIDS, Steroids (60mg daily for 4 months), DMARDs. Now am doing injectable MTX and Enbrel to try to stop bone erosions and restore some functioning.
I am ana negative (always have been) and did not get a doctor to take me seriously until iritis started and my resting heart rate was 144 beats a minute 2 years ago. I saw a lot of them too in many specialties. I was an over achiever, needed to eat more salt, exercise more/less, slow down or the worst...was "absolutely normal". I was beginning to think I was crazy since all the doctors acted like I was 'seeking' attention or making symptoms up etc.
Now that my C4 has been low for the past 4 months (on two different draws) I am wondering if the disease is just starting to manifest in labwork even though I have had bone, cardiac, and CNS involvement for years.
Has anyone had high CRP, Low C4, bone erosion and lupus like symptoms? Talk about posting my "life story" but I know I can not be the only one out there dealing with this. I am wondering if there is a treatment out there or combination that might have helped someone else like me.
Thanks, I look forward to being a member on the boards and learning from others!!!