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Questions & Uncertainty

Hey everyone,
I am brand new here and to all of this. I have not been officially diagnosed with RA, but my rheumatologist did prescribe Plaquenil last week because he strongly suspects it. I am fairly confused and is wondering if anyone else has a similar story to mine.

Three years ago I went to my doctor for extreme fatigue. I miss my multiple alarms almost every morning - I'm so tired I just don't even comprehend them going off and fall right back to sleep. If I sit on the couch for more than 10 minutes I'm asleep. If I'm in the car for more than 15-20 minutes and I'm not the driver I'm asleep. Even if I am driving I can feel my eyes wanting to close and have to fight to stay awake. My doctor ran a ton of tests, but nothing was found other than slight anemia and low vitamin D, so I was told to take supplements. The fatigue is still a daily problem that has never gotten better.

Two years ago I went to my doctor for extreme foot stiffness and pain on the very top with swelling. My sed rate was a little elevated, but nothing else was found so nothing was done. After dealing with fairly constant pain for months, it seems to have subsided a bit. Sometimes my feet feel okay and sometimes they swell on the top and hurt for a while, but it's pretty manageable.

This April I went to the doctor yet again after my hands started being badly affected. Joints in both of my hands (mainly my pointer and middle fingers) turn bright red and hurt constantly. My hands swell (mostly my joints & the spaces between and then my blood vessels pop out) are super stiff all morning (45 minutes to multiple hours), and my pointer fingers are starting to not be straight anymore. Most days the stiffness and swelling go away with use (I type at a computer all day for a living) but the pain doesn't subside unless I take a prescription NSAID. On really bad days I have problems with grip strength. One morning I couldn't get the cap off of something for my daughter's breakfast. After lunch at work, my hands are so tired and painful that I can barely keep typing.

Here's the confusing part that I don't understand, though. My symptoms are MUCH worse during my menstrual cycle (I'm 31). They don't go away in between, but the severity is less. On top of that, all of my blood tests have come back negative other than having a high eosinophil count. All of my autoimmune marker tests (RF, Lupus panel. etc) were negative and all inflammation markers were back in their normal ranges. The only thing that was out of whack was that high eosinophil count. She even sent me for Xrays and an MRI of my hands, all of which came back normal.

Since my doctor didn't know what else to do with me, she put me on Prednisone for 10 days. I felt better than I have in years. It took away everything and I could move perfectly again without any pain. Until my next menstrual cycle and it all came back. She referred to me a rheumatologist at this point.

After almost 6 months of waiting, I finally saw my rheumatologist last week. He doesn't know what to do with me either. I have visible swelling, redness, I'm in pain and it's in both of my hands. The prednisone worked and my symptoms seem to fit RA. But, I have 0 blood or imaging tests to back anything up. He's thinking very early stages of RA and gave me the Plaquenil with a follow up appointment in December to see if it's working or not. If not, I'm assuming that means no RA?

I'm so confused, has anyone else had anything like this happen?

  1. So, your ANA was negative on your bloodwork or was it weakly positive with no smear pattern?

    Ever heard of Undifferentiated Connective Tissue Disease? Ask your Rheumatologist what that is and how it is diagnosed. Some don't believe it is a real diagnosis.

    If your ANA is positive with a smear pattern, but nothing else pops on bloodwork, it can be sero-negative RA, or sero-negative lupus, or sero-negative any autoimmune disease. Some Rheumatologists don't diagnose sero-negative autoimmune diseases. My first Rheumatologist was like that.

    The beginning part of these diseases are very frustrating. Getting a diagnosis is hard. Then you have the trial and error of finding the right med combination. It sounds like your doctor is trying to track it down. Hang in there.

    1. My ANA was negative. The range said 0-.99 and I was .29. All of my autoimmune tests were completely negative. The only thing that was abnormal was my eosinophils in my CBC. After looking into them, they are an inflammation marker and can be associated with autoimmune diseases, but neither of my doctors mentioned anything about that.

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