Recurrent Reactive Arthritis

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I'm a 35 year old woman and last year I was diagnosed with Post Streptococcal Reactive Arthritis. I also have ME/CFS which was diagnosed when I was 15 years old.

In July I had sore throat that lasted for 3 weeks and wasn't getting any better so I visited my GP. She thought it was a virus but did a swab anyway. Over the next few days I noticed weakness, pain and swelling in my hands and knees, worse on the right side of my body. The pain got so severe I could not stand or use my hands. I went back to the GP and was told my swab tested positive for strep. I was given a course of penicillin and told to take ibuprofen and co-codamol for the pain. I was also given omeprazole to protect my stomach as I had gastritis a few years ago.

The pain continued for 2 weeks, I had another course of antibiotics but it wasn't helping so I was admitted to hospital where I was diagnosed with Post Streptococcal Reactive Arthritis. I was given stronger antibiotics and painkillers and a steroid injection (kenalog) and discharged. I gradually improved over the next few weeks but then in October I got a chest infection and another throat infection. 3 weeks later the Reactive Arthritis flared up again.

I was referred to a rheumatologist who examined me and said there was nothing wrong with my joints. He did lots of blood tests but they all came back negative except for a borderline strep count. I was discharged back to my GP as the rheumatologist couldn't help me because my arthritis was caused by infections. He said I needed investigations to find out why I was getting so many strep infections. I went to see my GP but she said there is nothing they can do. She said there is nothing wrong with my immune system because my blood tests are normal.

I had another throat infection in January and another in March, both of which lead to reactive arthritis flare ups. I am very fed up of being ill and in pain all the time. The doctors don't seem to be taking me seriously at all and the only treatment I've been given is codeine and paracetamol for the pain.

I would very much appreciate any help or advice. Surely the medical profession can do more than just give me painkillers? Thank you!

Clair

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6 Replies

  • Posted

    Hello Clair

    I have a similar history to you, going back 27 years of recurrent streptococcal infection causing tonsillitis and post streptococcal arthritis on 3 occasions. I also had erythema nodosum with one infection. I was ill for 18 months or so after each infection with an ME like illness although I wasn't diagnosed with ME until 18 months ago, when I developed similar symptoms to the poststreptococcal periods i.e. musclar pain, arthritis, exhaustion and generally feeling very ill. My ESR was always high

    post strep and it was high again when I was diagnosed with ME (ESR 48). The consultant endocrinologist said it didn't matter that it was high and I should just learn \"pacing\" but I wasn't willing to accept that. In the meantime my joints were getting more painful and stiff (especially my neck) and the ESR was still rising so I got a referral to rheumatology.

    He diagnosed cervical spondylosis and put me on diclofenac and co-dydramol and send me for physio, but still no explanation about the raised ESR. I got a second opinion at a London teaching hospital where the rheumatologist was great and diagnosed chronically recurring strep infection and strep arthritis. I am now on permanent penicillin and feel much better, as symptoms just recur if I stop taking it.

    I think you should ask for a second opinion for rheumatology at a teaching hospital with a good reputation for rheumatology. You are entitled to see a doctor who listens to you and will help you get well rather than just fobbing you off and leaving you ill. I think that some ME is certainly due to a chronically recurring strep infection and as you have so much history of this, may be permanent penicillin would help you as well.

    I hope this helps.

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  • Posted

    Dear  clairc

    just wondered how you are and whether you got any clarification on why you are suffering such symptoms so frequently. 

    I ask also as my 10 year daughter has been suffering recurrent bouts of 'Reactive arthritis, for the past 18 months, whereby her lower body joints become very painful and stiff, sometimes slightly swollen a couple of weeks after a viral infection. 

    Dont seem to be getting any help from doctors apart from dealing with the pain... but the periods he is having these flare ups she is immobile and in immense pain. 

    Just wondered had had you got any help with what you're experiencing?

    Mamjan

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    • Posted

      Hi!

      I posted my original message in 2010 and since then a lot of things have changed.

      In 1990 (aged 15) I was diagnosed with ME but the doctors were wrong.  I never had ME.  I was pretty much ignored until 2009 when I was diagnosed with Post Strp Reactive Arthritis but the doctors could even agree on that.  One doctor said I had Palindromic Rheumatism, another said I couldn't possible have that without gross swelling of my joints and said I had chronic Fatigue Syndrome and another said there was nothing wrong with me and I had Fibromyalgia.  They were all wrong.

      In 2013 I was diagnosed with Ehlers Danlos Syndrome - Hypermobile Type.  It's a connective tissue disorder.  My collagen is faulty and that causes problems with my joints and internal organs.  My joints are hypermobile, I get severe joint pain from partial dislocations and muscle spasms because my muscles are keeping my joints in place because my ligaments are too lax.  I don't know how all the doctors missed it.  I'd seen five rheumatologists and none of them spotted it.  I came across EDS by accident and I found it fitted my symptoms and I had to pay private to get a diagnosis.

      It's been a steep learning curve and I've had to see a lot of doctors but things are starting to make sense.

      Last year I was diagnosed with histamine intolerance and possible mast cell activation disorder by a urologist at St Mary's in London.  My specialist explained that when I get an infection the bacteria releases histamine and because I can't break down that histamine it causes massive inflammation that can look like a severe infection or a flare up of reactive arthritis.  I am currently undergoing tests but hopefully with the right combination of treatment and diet things will improve.

      I hope you get some help for your daughter soon.  I have three children and it's just awful seeing them in pain.

      Clair

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    • Posted

      Thank that's very helpful. 

      Grasping at straws here, and will investigate any routes.

      Her immune system seems weak  and she gets lots of viruses and this is the 8th time in a year she has been on crutches due to excruciating pain and stiffness in knees, ankles and hips. 

      Been at a and e and gps too many times to mention.... but finally have a referral to pad Rheumatologist. 

      Its frustrating when things don't fit into diagnostic boxes easily, but we need a diagnosis to get to grips with what's happening and try to deal with it. Your experience gives me hope that if we can see the right person at some stage we will get to that diagnosis. mamajan

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  • Posted

    I had similar issue with synovial fluid infection. Started with sore throats and a virus entered the joint synovial causing reactive arthritis had to crawl to bathroom. Took antibiotics for several,weeks. Haven't had it since. 

      I have hope that you can find the appropiate diagnosis for your daughter. 

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    • Posted

      Many thanks for your response, any info gratefully received. The term crawling to the bathroom certainly rings true for my daughter, as when she's in a flare up I literally have to carry her. 

      Appointment at paed Rheumatologist next week so hoping that throws some light on the situation. Best wishe, mama Jan 

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