Patient Comments: Reactive Arthritis - Personal Experience


How old were you when you were diagnosed with reactive arthritis? Please share your experience. Submit Your Comment

Comment from: Ders83, 35-44 Male (Patient) Published: May 09

I became aware of my reactive arthritis just prior to my 21st birthday. It took 3 or 4 months to diagnose what I was originally told was Reiter’s syndrome, now better defined as reactive arthritis. I am among the few it seems that inherited this due to the HLA-B27 gene I believe it's known as. I am now 35 and have trouble walking/standing for long periods. Most of my toe joints are dislocated and disfigured from the damage that has occurred. My left thumb which had been fractured when I was 12 is extremely enlarged at the knuckle closest to my palm, the 2nd knuckle is fused and will no longer bend, making it painful to pick up objects but I get through the day to day aches and pains by finding alternative ways to do what I can to live a normal active life.

Comment from: Glass artist, 65-74 Female (Patient) Published: September 29

When I was 29, I was diagnosed with iritis and told by my ophthalmologist to be prepared for a health problem in the future. Then when I was 34, after 3 strep throats within 2 months, I first developed right thumb pain and swelling. Then joint pain in my right sacroiliac joint (SI) that continued to worsen. I was treated with different NSAIDs for 8 months, and sedimentation rate and pain returned to normal, but doctors could not diagnose me. I had no more problems until I was 39, when strep throat again triggered another severe episode. My HLA-B27 was negative, but I received a Reiter’s syndrome diagnosis. After that, anytime I had a flare, a cortisone injection in my SI joint worked. I had more flares, after food poisonings and even stress (most often stress). Then when I was 59, I began having flares of costochondritis. At 62 they started me on Enbrel, which controlled any flare. Finally at age 66 I was diagnosed with Crohn’s disease. I was switched to Humira. Since the Crohn’s diagnosis almost 2 1/2 years ago, I have had more flares with costochondritis, tendinitis, arthritis in some of my joints and Crohn’s flares, too. These past 4 months have been terrible for me. I learned when having a cracked tooth (and root canal), the gum doesn't heal, creating more pain, which will necessitate an extraction. This often happens with patients who have auto-immune and inflammatory conditions. Reactive arthritis is truly systemic!

Comment from: Mr.Pain, 35-44 Male (Patient) Published: April 24

I was diagnosed with reactive arthritis about 3 months ago. It started as mild lower back pain, then as it worked its way up my spine, the pain steadily increased especially at night. At times it felt as if it was attacking my lungs making it difficult to breathe or even move. The pain would go away for a day or two, then return in another area. NSAIDS do nothing for the pain, I was on prednisone for about 3 weeks and it worked like magic. Sadly I can't continue using it, and the pain is returning. I'm a 40 year old man with two young girls. It's a scary feeling not knowing how much longer I have not being able to do the simple things.

Comment from: MeToRA, 65-74 Male (Patient) Published: March 13

At age 64, and within a couple of days of a colonoscopy, I contracted a severe gastrointestinal infection. For the next six months I had frequent diarrhea episodes. I was treated with severe medicinal applications, and lost approximately 50lbs. Shortly thereafter I developed reactive arthritis that has moved from feet issues, knee issues, hand issues, and now after 5 years contending with these issues, I still don't have much relief with greatly reduced mobility. I have a little relief when in bed, but standing and walking causes severe pain.

Comment from: Willitneverend, 35-44 Female (Patient) Published: December 31

I was diagnosed with reactive arthritis ten years ago, at 32 years of age. Both my feet are affected. I am HLA B27+. I am still in pain every hour of every day, I don't sleep well, and none of the treatments have worked for me.

Comment from: Elizheva, 55-64 Female (Patient) Published: February 11

I have reactive arthritis after diverticulitis with infection of E-coli and I had to have a drain in my side with two months of antibiotics daily. I began experiencing, after about three weeks or so, pain in my hips that radiated down to my knees and ankles, then my lower back. I have tried numerous drugs, right now patches for pain, anti-inflammatory diclofenac, and methotrexate injections. I have found no pain relief and it is hard to sleep or walk much with so much pain. I am 63 years old. This is terrible pain and I’m unable to manage much with the radiation of the pain up and down my spine and hips.

Comment from: sikdar, 25-34 Male (Patient) Published: October 31

I was a 32 years man when I was diagnosed with reactive arthritis. It was a horrible pain under my feet, they were swollen up with reddish color. By touch the feet were cold, as if they came out of ice. Touching caused huge pain, both my knees were locked, I was not able to fold my leg at the knee. At the same time I also had high fever with vomiting tendency and I had to be moved by wheelchair.

Comment from: ninosca, 45-54 Female (Patient) Published: May 09

I have done all kinds of tests to find out why my joints are inflamed. The only thing that came back positive was the HLA-B27 test. My doctor says I may have reactive arthritis. It’s been almost two years, and the symptoms aren’t getting any better.


The term arthritis refers to stiffness in the joints. See Answer

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