Recurrent Reactive Arthritis
Posted , 7 users are following.
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
2 likes, 10 replies
Guest
Posted
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.
Mamjan clairc
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
clairc Mamjan
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
Mamjan clairc
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
jaimemwilliams Mamjan
Posted
i know this thread is old but i am hoping you will see this. Did you have any luck with figuring out what was happening with your daughter?
i have a 7 year old son who has been experiencing similiar issues for over a year now and its so frustrating
StyreneOxide jaimemwilliams
Posted
hello.
My daughter (5 almost 6) was just diagnosed with post strep reactive arthritis. This diagnosis was made by a general doctor. She has an appointment tomorrow with a specialist.
I was wondering if you could tell me your sons onset story. My daughter had strep and then about a week later started getting pain in her body. The spots were back of knee, elbows, hip/thigh, and then front of knee. she started to limp or walk on her tippy toes. ibuprofen seems to help pain right now. she also has been getting headaches.
I am concerned because I had serious reactive arthritis in 2016 that turned into chronic spondyloarthitis. Seems to run in my family.
My husband also got extremely mild reactive arthritis after some stomach infection. luckily his went away fast.
jaimemwilliams StyreneOxide
Posted
My son was diagnosed with PSRA as well but I feel like we are spinning our wheels sometimes. He got really sick at age 1 and was hospitalized. He had a test done that indicated a autoimmune condition but it was never solved. At age 5 he contracted lyme disease and got really sick and went through a year of treatment. all along he has had bouts of joint pain, swelling, and severe behavioral changes. he got strep spring and wound up at in the hospital a week or so later with severe joint pain - he could pick up utensils or walk up stairs. the hospital thought it was the lyme and the lyme dr thought it was PSRA - wound up heading to a children's rheumatologist who agreed with the lyme dr. He is not on a preventative dose of antibiotics daily.
He just recently displayed all the symptoms that go along with him having strep but test came back negative. It is so frustrating - I know something is wrong with him but we can't figure it out!
What kind of specialist did they refer you to?
I hope they are able to figure it out what is going on with your daughter - it's so scary when you kid is sick. Especially when a lot of the symptoms can easily be attributed to something else. I am glad your dr listened right away - we had to switch dr's just to get one to listen.
hope4cure clairc
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.
Mamjan hope4cure
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
hannah93936 clairc
Edited
I'm so sorry they aren't taking you seriously. Which part of the country are you in might I ask? When you're having a flare up of arthritis, go to A&E. I did this and I was instantly seen by a rheumatologist who diagnosed me and has seen me for three months. My symtpoms haven't improved much but I am waiting for my next line of treatment which will be DMARD's.
I tried painkillers, ibuprofen and then steroids as a shot and then tablet forms for 3 weeks. I am on naproxen and Co dydramol 30mg codeine. You really need to be asking if you can take DMARD's such as Methotrexate or Sulfasalzine. They can refer you to a rheumatologist and should not be just sending you back to your GP. I was seen at UCLH which is a brilliant hospital and I know treatment won't be the same in other parts of the UK but they should not just be sending you back to your GP after failing to treat you properly. I would demand a change in medication. Naproxen, higher dose of codeine potentially and steroids to calm down your immune system but this might be a problem if you're getting infections - it definitely sounds like you will need to have the underlying cause of your arthritis treated before they try and calm your immune system down. You definitely need more tests done, I would just keep pushing to be taken seriously, GP's are not the be all and end all and I have personally had a disaster with GP's in the past. This is your health and you need to be firm and demand a referral to a specialist facility or place a formal complaint. I wish you all the best.