** **"You have Sero-negative RA," my new rheumatologist. Dr M said. She was mater-of-fact. No doubt in her voice or her demeanor. My reply was, "I know."
I was strangely calm that day, May 10th, 2011. I had known in my heart for years that had RA. The bone erosions on my hand x-rays have confirmed my self-diagnosis.
When I was 37 years old, I had a Bakers’s Cyst in my right knee that burst and turned my leg black and blue. I went to the walk-in clinic because it was painful, and I had no idea what it could be. The doctor there diagnosed a Baker’s Cyst. He said those usually show up in people who walk a lot. He looked puzzled, and then said to come back in if it swelled up again, and he would drain the fluid. That was it.
I should provide a little background here. I was reared in a small town in Ohio. I am a Mid-westerner born of parents who both grew up in West Virginia. Those of you familiar with that part of the US know that we are "tough" people. We don’t whine. We bite our lip, if necessary, but we do not complain. We do what we have to do each day to get through life, and we count our blessings as often as possible. Unfortunately, this attitude probably delayed my diagnosis by years.
As I lived my life and found myself in my forty-something years, I started having a lot of trouble with my wrists, hands and elbows. My shoulders hurt, too. I remember trying to shoot some hoops for exercise one summer. That was a disaster. I ended up with many bouts of bursitis and tendonitis during my 40’s. I noticed I was always fatigued. I had no energy left over after work to do anything fun. I was dragging, and my knees continued to hurt. I was prescribed NSAIDs and muscle relaxants and sent on my way.
My husband and I moved from Kansas City to rural Missouri in the late nineties. We built a house, doing a great deal of the work ourselves. That was a tipping point. I was in a lot of pain and I started taking OTC anti-inflammatory medications every day. Finally, I saw a Rheumatologist.
The first Rheumy I saw diagnosed "mild RA" or a virus. He had the personality of an alligator, and he told me to just take 2400 mg of Ibuprofen every day. I did this for a year. Consequently, I have chronic gastritis. I didn’t like this doctor, so I stopped seeing him, and literally limped along on my own for a few more years.
Last May I was out of town at a conference and it was raining. It rained all day and all night, and I was suffering. The last day of the conference I stayed in my car with the seat reclined, trying to get some rest and relief from the pain in my feet. I could barely walk.
I saw my PCP the next week and she ran an arthritis panel. My blood tests came back negative for RA. She saw the swelling and pain I was in and referred me to a new rheumatologist.
This Rheumy diagnosed Erosive Inflammatory Osteoarthritis. He never ordered an x-ray of my hands or feet. He did treat me with Tramadol and Plaquenil. I stuck with this rheumy for nine months. The Plaquenil did help me for six months. Then I had an adverse reaction and had to stop the treatment. My rheumy at the time told me to take 4 mg of Prednisone a day and prescribed Chloroquine to replace the Plaquenil.
We all know that 4 mg of Prednisone does not help much with pain and inflammation. I had a bad reaction to the Chloroquine, also, and so that drug was stopped. During this time, I had two level nine flares, and I was desperate. My orthopedic doctor was wonderful to me. He prescribed Prednisone to get me through the flare, and referred me to my current rheumatologist.
I am now taking Prednisone, Methotrexate and Tramadol for my RA. I am attempting to taper from 15 mg of Prednisone to 10 mg of Prednisone a day. This is proving to be tougher than I anticipated.
The bursitis I had in both shoulders, both knees and both hips is much better than it has been for years. When I told Dr M that I almost had the bursa removed from my left hip, she shook her heard no and said I should never do that. She said the bursitis was caused by my RA.
The longstanding RA in my knees has caused quite a bit of damage, and I now have OA as a result of the constant inflammation. I am currently getting Ortho-Visc shots in my knees, and hoping they will help ease the pain and stiffness. I will be facing TKR in both knees in the future.
I have read many accounts from sero-negative RA patients who have had a tough time getting doctors to take them seriously. That indicates to me that there are a lot of doctors out there who are not doing their jobs well. RA should never be diagnosed on the basis of blood tests alone. As patients, we need to push for a diagnosis, and if necessary change doctors until we find one who cares enough to to take the time and consider medical history, clinical symptoms, and blood test results.
We need a diagnosis as soon as possible so that we can start medication to slow down or stop the bone erosions caused by RA. My story illustrates the need for us to be self-advocates. We need to ask questions, and not let doctors brush us off, treat only the symptoms, and not look for the cause of our constant pain, fatigue, bursitis and tendonitis flares.
I hope you all have found doctors who treat you with respect, and who are open and willing to discuss all of your treatment options and other needs. If this is not the case, please consider getting a second opinion. Do not ignore the signals your body is sending you.