Hello all,
I am a 41-year-old female with reactive arthritis.
Back in January 2025, I suddenly felt stiffness in my left knee while using the stairs. I did not have any history of fever or infection-related symptoms before that. I thought it was just muscle pain and that it would go away on its own.
In early May 2025, I noticed swelling around my left knee compared to my right knee. That was when I went to a clinic and saw an orthopedic surgeon. My ANA and RA tests were negative, but my ESR was 40 and my ASO was high. I was initially diagnosed with rheumatic arthritis. I was prescribed penicillin and Tri-cosamine for three weeks. After three weeks, the stiffness improved significantly and my ESR went down from 40 to 29.
However, since he was an orthopedic surgeon and my condition involved arthritis, I decided to see a rheumatologist in early June 2025.
I was then diagnosed with reactive arthritis (ReA). Sulfasalazine along with Vitamins A, D, and B were prescribed, and I stopped all medications prescribed by the orthopedic surgeon. After six months on Sulfasalazine, the swelling was still present in my left knee and my ESR increased again from 29 to 38.
My doctor then started me on methotrexate together with Tri-cosamine (as I requested). After one month, my blood test showed that my ESR decreased to 25, but the swelling and stiffness were still persistent. During that visit, due to my swollen left knee, my rheumatologist prescribed a new medication: Tofacitinib 5 mg twice daily, together with methotrexate.
It has now been exactly one year, which is often the expected time for ReA to resolve on its own. My HLA-B27 test result is negative.
Today is Day 3 of taking Tofacitinib. After learning about its side effects, I feel very scared and confused about balancing the benefits and risks of taking this medication. For the past year, my only symptoms have been a swollen knee and stiffness. There is no pain. I can walk normally, but I cannot fully bend my knee.
If I only have to endure these symptoms long term, I would prefer not to take the new medication (though I am okay continuing methotrexate). My concern is what further damage ReA could cause to my body. After years of having ReA, could it affect my heart or cause permanent joint damage? I have seen posts from people who have lived with ReA for several years without heart problems, although their quality of life was affected.
Can anyone share their experience or thoughts on this?
Sorry for the long post.