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

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Hi All,

My knees and ankles are hurting for 8 months, it was harder in first few months. I could hardly walk only for few minutes and I was so depressed. My pain started with knees and then went to the ankles. I had some inflammation as well.

Took several months till I was told I have reactive rheumatism. Nothing is visible from my blood test though. I feel better now but I have again good and bad days and mild fatigue. I am taking methotrexate 7.5 each week for 2 months now. Haven't felt much effect yet. I am constantly being told by doctor when I have pain I should take painkillers. But I want to see pain really go away not to put myself on drugs just not to feel it. I can of course do my daily activities and it is not severe pain.

I would like to know:

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

2-did you have to take synovial fluid test?

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

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

5- what natural remedies and diet helps you?

Wish you all health

Ambitious

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  • Posted

    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.

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    • Posted

      Hello Ginaji,

      I want to know how do you feel now. I am suffering for last 4 to 5 months. I am now following your diet suggestions and somewhat feel better. Please do guide me.

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  • Posted

    I forgot to mention. The immunologist prescribed NSAIDs and high dose paracetamol. I was on them for nearly 8 weeks
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    • Posted

      Hi Ginaji,

      Thanks for sharing your your experience. ANd glad that you feel better already.

      I have few questions:

      Did you take this dairy free, gluten free diet only temproriely or you are planning to keep it as long as you have pain?

      Did you do HLA B27 test? Are you positive?

       

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    • Posted

      Hi Ambitious,

      My son is gluten intolerant so the rest of the family eats a low to zero gluten diet. What I have noticed is that I feel worse if I eat foods made of all purpose flour, yeast, additives, sugar etc. I'm ok with home made whole wheat foods like roti flatbreads.

      I noticed that my sinusitis got better once I removed dairy. I do cheat but I feel mildly sick after a few days. So I guess I will be on this diet for a long time.

      I didn't check for hla b27 though I have associated symptoms like ReA and IBS . My doctor planned to run it if I did not get any better. I believe it's more common in Caucasians. From what I read, there's nothing much I can do if it is positive. So I try not to eat inflammatory foods (like gluten).

      My homeopath says I have a pH imbalance which will weaken my immunity and hence raise the risk of an auto immune disorder.

      Hope you feel better

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    • Posted

      Hi ginaji, I don't know who told you that if your HLA B27 positive is a diagnosis they don't know what they're talking about just like with ankylosing spondylitis which is one of the spondeo arthropathies as reactive arthritis is one of the spondyloarthropathies there are many people that are HLA B27 positive that do not have reactive arthritis Etc just because you might be HLA B27 positive is not a diagnosis now you could also be HLA B27 negative and have reactive arthritis in other words a lot more needs to go into your diagnosis then just a genetic blood test for HLA B27 good luck

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  • Posted

    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)

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    • Posted

      Dear caitB52,

      Thanks for sharing your story, it helps so much to see what others have gone through and what has been helping them. I have been overally better and I will share shortly below this descussion an update about how I have been feeling and what medication I am taking.

      Take care!

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    • Posted

      My daughter has been diagnosed with reactive arthritis. She feels extremely tired. Any idea what she can take to help. The pain and inflammation to her feet is under control since taking sulfasalaine but the tiredness is greatly affecting her quality of life.
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    • Posted

      how is your daughter doing now? did she find a cure for her tiredness? I am going through a phase of fatigue now, I believe it's adrenal fatigue because im trying to come off prednisone.

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  • Posted

    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 smile, I will know in a week.

     

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    • Posted

      Hello,

      I am pleased to read about your resolving condition & hopefully you will be able to come off the methotrexate when better - it can have some alarming side effects.  It sounds like you are on a good trajectory to recovery. 

      Do not be (overly) alarmed if you do indeed carry the HLA B27 antigen as this autoimmune defect positively protects against viral illnesses like influenza as well as effecting a latency in HIV development to AIDS.  Actually, it is an interesting antigen.

      You look young in your photo and no doubt your hair will grow back more luxuriously when finished with the methotrexate.  All the best, look foward to hearing your news.  Take care - regards Cait

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    • Posted

      Hi Cait,

      Thanks for this info, it was really good and I could relax a bit and worry less for the test. I got the result though today and it is negative anyway.

      I hope my hair does grow back it is quite depressing to see it like this, although I am more concrned at the moment about my health than my hair at the moment.

      Unfortunately last week I was feeling more pain, and still it is hurting, hopefully it just goes away all soon.

       

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  • Posted

    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.

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