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

Hi,

I'm recovering from ReA which affected my right knee pretty badly in May.

1. Yes, I had an upset tummy for a couple of days after which my knee started swelling accompanied by low grade fever. I was under treatment for IBS symptoms. My gastroenterologist put me on antibiotics for the stomach infection and sent me to an immunologist.

2.Yes, synovial fluid was tested. Showed inflammation

3.Didn't do an MRI

4. I do have a stiff knee after a long drive or periods of inactivity. Nothing too bad. I was given exercises to do at home twice a day. It's been nearly 5 months.

5. I ate a gluten free dairy free refined sugar free diet with almost no processed foods. I took curcumin capsules daily along with homeopathic treatment. I think these two in combination normalized my blood work. The immunologist was surprised at that. He asked me to stay away from raw salads, juices etc.

I live in India and I was lucky to get diagnosed within a couple of days of my knee swelling.

Dear Ambitious,

Alas, I have lived with RA for approximately 20 years - living as an expat in Jakarta supporting my husband in tenuous circumstances; eating from warungs - we all as a group over the year experienced multiple GI upsets.  I was 28, no ill health until then and thought the sicknesses a small inconvenience.  

My symptoms came on slowly over two to three months, could not turn my neck, then uveitis, swollen ankle on the left side and thus favouring the right leg a subsequent swollen knee (all of which were extremely painful).  I did not want to bail out back to Australia so I kept on until I was completely bed ridden and unable to chew as one side of my jaw was affected - so could only suck fruit.  

Finally and thanks to Qantas, a wheelchair & straight to Royal North Shore Hospital Sydney for seven days I was diagnosed with reactive arthritis.  I had never heard of the syndrome and being adopted had no familial "heads up" about any auto-immune predisposition.   I had a two knee aspirates, one was done well, one was bloody painful.  No infection or bacterial infiltrates.  Bloods showed mild aneamia, high white cell count, high platelets, raised CRP and ESR.  I had a bone scan which showed up inflammatory action in my back around the thoracic 7-8.  I do not believe an MRI would show anything as the damage to joints and bony structures comes later.  

So, a few months course of weaning prednisolone and started on sulfasalazine with rehab.  My inflammatory markers came down and my life picked up again but changed forever.  I am HLA B27 +ve which can be telling for RA prongnosis, which for myself has been difficult.  

To recall my ankle and knee involvement 98% resolved.  Occasionally, I can feel some mild ache in those joints.  The back pain in the thoracic region was very troubling for approximately 7 years.  I could not lie either on my stomach or my back for any period of time, having to lie on my side.  My bladder is affected and I always have microscopic blood in my urine, no pain on micturation but sometimes on flare up a sickening dull burning pain.  

I have done little in the way of good to relieve my condition and actively imbibe regular and too much alcohol, which I am sure cannot help.  I went of the sulfasalzine as my inflammatory markers were at baseline but the pain still remained and the drug is liver toxic combined with alcohol.  I usually after a viral cold get uveitis - about twice a year.  Easily treated with steroid drops

As I get older I know that I have to get a proper GP and organise my health and well being.  I at this this time are the most pain free I have been since infection and can credit this to a high dose of venlafaxine 300mg daily.  However, the greatest burdon of this inflammatory condition is chronic tiredness [don't laugh as this is no doubt enmeshed with alcohol and SNRI use as well as RA syndrome].  And yes RA if it does not resolve as an acute condition is best described as a syndrome.  

I wish you well with your situation.  Do all you can do to manage this early and quickly.  Fond regards CaitB52 (I am now 48)

Hi,

I just want to update my situation.

I have been taking methotraxate 7.5 for 3 months (one month break after first months). 

My symptoms have got much better, I am gaining more flexibility in my knees and I am doing water aerobics (which I find it really good for my conditions) and I feel the knee pain less often compare to 2 or 3 months ago.

since last month my hair is falling 10 times more! it is huge hair fall! I think my hair is already half of what it used to be, but doctor tells me it will grow back when I stop taking the tablets.

My knees are clicking really loud and doctor says there should be some mini damages to my knees and that's why. But she says it should get better gradually.

Unfortunately lab lost my HLA B27  test and I had to re-do it, I don't know yet if I am positive (hopefully not , I will know in a week.

My friend got this after an unprotected sexual encounter. He has had it for decades now. I used to beg him to get on antibiotics and send him many research papers about how it is likely caused by hard-to-detect chlamydia infection in the synovial fluid. I begged him to travel to see doctors who know about this, since he could afford it. He didn't listen and just kep taking anti inflammatories. Now, it is 30 years later and he has developed a blood clot in the same leg that was was effected by the arthritis. He has to wear a stocking and take blood thinners.