Patient Comments: Felty's Syndrome - Symptoms

Question:

What were your symptoms associated with Felty's syndrome? Submit Your Comment

Comment from: TCP, 55-64 Female (Patient) Published: February 21

I was diagnosed with Felty's syndrome in 2004 after being misdiagnosed for 18 months with myelodysplasia after several bone marrow biopsies with inconclusive results as to why I had so few white blood cells, an enlarged spleen and anemia. The hematologist recommended a bone marrow transplant but the hospital sent me home and said I did not have myelodysplasia and to come back when I 'fell apart.' Only when I saw another doctor did I get a diagnosis in 5 minutes; Felty's syndrome. Flash forward to 2017. On methotrexate for rheumatoid arthritis (RA) since 2004, suddenly low white count fell even lower. I went back to a hematologist. I was taken off the methotrexate, and ultrasound, and CT scan revealed enlarged spleen. No one listened to my Felty's syndrome comments. I was put on low dose of prednisone to help prevent an RA flare in November. Counts went to normal. In January, they fell dangerously low and the neutrophils were at 200. Bone marrow biopsy was inconclusive. Bone marrow is 70 to 80 percent cells and the rest fat instead of 50/50. Platelets are tiny. I was given two shots to grow white cells work. Counts went up to normal. White cell counts fell back to low levels this week, 3 weeks after the shots to stimulate growth. Hematologist says maybe Felty's but still could be early myelodysplasia (here we go again). I've had shingles multiple times, frequent bronchial infections and seemingly never-ending coughs throughout these past 14 years. So I still argue for Felty's due to the low white count, enlarged spleen and RA symptoms. I have had one unusual spot on my leg that could have been an ulcer but thankfully just the one so far. I am off methotrexate still in case it's the culprit of the suppressed white count. I am seeking a rheumatologist who understands Felty's because mine is not that familiar with it. He asked the hematologist why my spleen was enlarged and I've gone to him for 6 years.

Comment from: nanbeth, 65-74 Female (Patient) Published: February 21

I have seronegative, inflammatory arthritis diagnosed in September, 2016. I've had flares since then and high C-reactive protein, although that is improving. However, I have had dropping white counts for this 1.5 years. I don't know that I have an enlarged spleen, but the lowering WBC is concerning. I have not had problems with infection, just pain and overall fatigue, typical. I wonder if all these are typical for Felty's syndrome.

Comment from: darran, 45-54 Male (Patient) Published: May 11

I have Felty’s syndrome since about 2005. My doctor diagnosed it straight away after a few tests and keeps me stable with medications.

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