Reactive arthritis: share your symptoms, how long you have had it, treatments you took and results

Hello, I've had Reiter's Syndrome (aka reactive arthritis, immune reactive arthritis, blah blah) that for me is a combination of anklylosing spondylitis (AS) and psoriatic arthritis (PsA). I am HLAb27 positive, have recurring attacks (started S L O W L Y when I was about 6 yrs old; got worse after left college; I knew I should have stayed). I have taken most NSAIDs, myochrisine (gold), butasolidin (outlawed for horses (performance enhancer) before humans in the 1970s), motrin, aspirin, indocin (better than Celebrex and less deadly than Vioxx). I have used methotrexate (MTX) for the past 42 years except for a period when I started Enbrel (minimized pain but masked joint destruction). I started using MTX via pills but switched to subcu about eight years ago. I also show positive for sed rate, c-reactive-protein, creatinine, MCV, and anemia. After Enbrel, I have tried Otezla, Humira, Cosentyx, and now Remicade (fast acting ... took about six weeks to "free-up" my body from the waist down.

A few thoughts to what I have read quickly ... 1) I don't know how one can recover from arthritis ... maybe a relapse. 2) Once an HLAb27, always an HLAb27; it's hereditary 3) PROTECTED SEX ...REPEAT 'n' times; getting gonorrhea and so on causes a reaction as do infections from the nose, stomach, lungs (pneumonia) from cuts to the skin (as in walking in dirty water with athletes foot). 4) join an arthritis support group, 5) do NOT stop MTX without making a personal diary noting no less than once a week where you note even subtle changes to joints, skin, pain, etc. I did NOT note then and did NOT realize that my arthritic "crud" grew on the outside of my right heel, that it grew in and around my left MCP, and that it made my TMJs hurt even more. So three operations, scrap the heel, replace MCP with carbon filament, replace both TMJs with titanium screws, inserts, bolts. NOW ... it seems that the AS has affected my entire spine enough so that I constantly feel tingling in my left hand, sometimes down my legs; the PsA has become slightly more active again on my feet (not a big change).

PS: I recently read an article about a "unknowing" couple that was trying to sue their doctor because MTX caused birth defects. Give me a break! How dumb can folks be? For the past 40 plus yrs I have always seen warnings about birth defects for both partners although not as bad as thalidomide (some research sees thalidomide as a potential cancer drug; gosh, does anyone wonder why? :-) ) google "thalidomide cancer medicine" and "thalidomide celgene". I can be more detailed if necessary but not on-line. I hope this brief description helps someone. :-)

1- if all of you diagnosed with reactive rheumatism had some infection detected and took antibiotics.

Started off as Campylorbacter food poisoning (my fault, improperly cooked chicken), and within a week the palms of my hands hugely swolen and were in agony, followed by lower back then feet. I took antibiotics for the food poisoning just after the hands started swelling, so I know my ReA is not caused by the antibiotics.

I could also only eat plain bread/bagels for about 3 weeks after the food poisoning.

I self diagnosed ReA as I quickly discovered that my Drs knew nothing about it, so thanks to google I sussed out that there is no cure, just relief.

I had to practically beg for NSAID stronger than ibuprofen as I was borderline needing crutches. Now I have Naproxen the world is a much better place!

2-did you have to take synovial fluid test?

no tests, the Drs here (UK) seem to know little about ReA

3- was anything visible in your MRI? My MRI is all ok.

no tests, the Drs here (UK) seem to know little about ReA

4-are you ok now? How long you were or have been involved with reactive rheumatism?

I've had the odd few days where it felt like it was gone, but then it would come back again at varying severities, always worse in the morning or after being stationary for more than an hour.

Worst is when it hits my back as i can't then get out of bed.

If it goes in the soles of my feet (most common) it's annoying more than anything, as I can only shuffle about, but with a desk based job and collegues who can fetch coffee, it's not that bad as I can still join in with life.

in the palms of the hands can be hard to deal with, as then it hurts to drive, open bottles/packets, and you just feel plain useless and at the mercy of everyone else. it really takes it's mental toll on you.

in total i've had 2 weeks off work as a results of ReA, and many days working from home when I could not walk enough to get there.

7 months on from the original infection and flare up, I have been 'clean' of Naproxen for 3 weeks 😃 My knuckles are often red but not worse then achy, everyday when I get up my feet are bright red and swolen but soon calm down, and my right foot has constant low level pain in a few toes. But overall not currently bad enough to need long term NSAID and the stomach risks that entails.

it's Flu season here now and I have two small kids to bring desiese into the house, so I'm expecting another flare up soon and have a stockpile of Naproxen at the ready.

5- what natural remedies and diet helps you?

Keeping away from non processed dairy seems to help (pasturised milk on cereal causes gut issues in me which then make the ReA worse).

I cannot stress enough how you need to keep moving in a flare up, as it helps keep the inflamation down (preventing tissue damage) and keeps your muscles strong. you just have to me measured in what you do.

I was diagnosed with reactive arthritis in 2016. My main symptoms were bathroom urgency with mucus for a couple weeks then the severe right ankle pain with swelling and redness started. I also had pain in my elbow, back, and wrist, but not swollen. I could not walk and the worst days I could not get out of bed.

I am in a foreign country so when my blood showed high creatine I was flown to Dubai to see specialist since they thought I had kidney involvement. I was started on steroids in febuary and ended in late march or early april. I still had minor pain, but my blood was normal and I was told it was normal. In september I got pregnant and pain went away.

Last October about 5 months after my son was born I started getting finger pain and swelling. My blood was normal. By May my back and ankle hurt. My blood was still normal. The pain is so much more minor than the initial reactive arthritis so i try not to complain, but the fatigue. I got a back MRI and showed sacroilitis. I was diagnosed with reactive spondyloarthritis. They describe it as chronic reactive arthritis. I have been taking sulfasalazine a little more than a month, but it is still too early to tell.

I was in the hospital with ear infection and mastoid inflammation so they think that was my cause or possibly the cold or flu I had leading to the ear infection. I took like 4 different types of antibiotics. Pills, IV, and injection.

I did not have synovial fluid taken.

No MRI then since my inflammation was very obvious, MRI now shows inflammation and ultrasound shows tendon inflammation in ankle.

I am not ok now. It is minor and I can walk. I am thankful everyday that i can walk, but I am not normal.

I tried sugar free, dairy free, gluten free diet, but it didn't work for me. I seem to improve when I go back to my home country for vacation though.

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