Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
So I had an appointment with a new Rheumatologist last week. We were off work so it was a good time to get that appointment scheduled.
I notes several things that just didn't seem right to me, and I am wondering if any of you have had similar experiences. I know that I am coming from the experience of the Mayo Clinic, so I am a bit spoiled in terms of how visits go, but this was almost depressing.
First, the doctor I saw basically focused on osteoarthritis. Granted, they treat both at this clinic, but the focus was not on how I felt my RA was doing, but rather on how my OA may be causing more symptoms. I asked him to look at my fingers on both hands, which are rapidly deforming (twisting towards the pinky, but at the PIP and DIP joints) and he showed me his hands and said, "I have the same thing but I don't have RA". I was shocked because each of the Rheumatologists I've seen have said my finger deformity is due to RA.
He didn't do a full physical exam - he looked at things, but didn't count joints that were sore of inflamed - he basically checked my heart and lungs. He didn't check my lymph nbodes (even though one of my symptoms of late has been heavy night and day sweats). He told me to come back in 8 weeks and then had blood drawn for labs...
...that had to get sent out because they don't have theirt own lab in their facility.
Now again, I might be somewhat biased from my exprience at the Mayo, but this all seems like a total lack of care for a new patient. I would expect him to review medical information, discuss my symptoms with me, and then take a look around and make sure he knows what's right and what's wrong. If I tell you my elbows, knees, wrists, fingers and feet hurt, I would think that would be an area of focus. He didn't seem interested in any of that.
Am I expecting too much? I am pretty certain I will not be going back to this guy.
Having said that, that is no excuse to chalk it up to OA, especially if you've tested positive for RA?
I agree - keep looking for a good rheumatologist. The fact is that if you're starting to show deformities you need to be on a disease modifier to stop the progression and stop further hand crippling. What are you on now?
1. 5mg Prednisone daily (though I am flaring now so I am doing burst and taper). Note: this Rheumatologist decided to cut my Pred in half, so I was taking 5mg daily, he just cut me off at 2.5mg daily. I asked about tapering by 1mg a week/month/whatever and he said just drop to 2.5
2. Sulfasalazine 500mg twice per day.
3. MTX Sub-Q .8 ml every week
4. Humira 40ml pre-filled syringe every other week.
We dropped Plaquenil because we thought it might be contributing to my tinnitus. It didn't really change anything when I went off of it for my ears. Maybe I need to go back on it.
I will be meeting with my new Internist/PCP on Wednesday of next week. The orthopedic surgeon I saw today regarding my hips and lumbar spine recommended one that is in the same building as this new Internist. I am hopeful for a referral to him.
What was actually sort of funny was that the ortho I saw today basically confirmed everything I had heard from Mayo before, and repudiated everything that other Rheumatologist had to say. It was nice to be validated and not feel like I am going crazy. It doesn't make the pain go away, but it at least shows I'm not completely out of my mind.