reactive arthritis

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I was diagnosed with reactive arthritis 2 months ago after a bowel infection (food poisoning during chrstmas holiday in egypt) I thought ReA was supposed to clear up between 3 and 12 months, by the looks of things it doesn't.

Inflammation first started in my heel then big toes, both knees, slightly in fingers and now top of neck, giving me awful head pain and numb arm wen wake up.

Iv'e had 3 steriod injections which give you false hope as the pain goes only to coe back in about 3 days.

I take 3 diclofenac a day

1 tablet to minimise bleeding due to diclofenac

4 Sulfasalazine (started 1 a day increased to 4 over a month) only been on sulf a 5 weeks, no side effects but no ease of pain yet.

I take upto 8 tramadol a day for pain, these stop the pain but are very strong they make me really dizzy and I find it hard to sleep.

Is there anyone out here whos symptoms of ReA have gone, need lots of hope.

I have been sick from work for almost 3 months, I'm a 32 year old teacher and find it impossible to teach at moment with pain or feeling I get from painkillers. I was a fitness fanatic too, went to the gym 5 times a week loved it, I haven't been able to go for 3 months, really frustrating, I really want to hear from someone with hope please.

I am HLAB27 positive and my protein levels are around 150 but have been as high as 190.

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  • Posted

    Ken, we don't pass on postal/e-mail addresses via the open forum. To be able to do this you would need to register with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.
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  • Posted

    Hi.......I have recently posted my own experience of reactive arthritis under my Patient UK name Melody. If you decided to undertake a similar experiment involving a low-fat diet I would be most interested to hear of the outcome. Best Wishes.
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  • Posted

    Brella ,

    This is Kevin see my posting of the 2nd March .

    Have you not tried Prednisolone ( Medrol by Pfyzers ) , you'll see several postings indicating this medication as having given relief . There's also another product that I mention in my posting , that I've not tried but is supposed to replace favourably the above .See what your GP says .

    Hope the support you've been getting from the other contributors is helping you along .

    All the best

    Kevin

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  • Posted

    Im just on the cusp of being diagnosed with reactive arthritis - I say on the cusp as Im still awaiting the results of tests - but it seems that all I have read so far points to it.

    10 days ago I couldnt even walk- nor lift a cuppa - seems like every viable joint blew up in response - I was given codiene and diclofenic and later that week moved onto steriods. The swelling has abated but I still feel as though its lurking about my joints with aches and pains Ive never felt before.

    Now I read that this isnt a one off event - that it can continue for a longer period than I care to think about. Im feeling rather despondent as prior to this I had an active life. An energetic 3 year old and mad bouncy dog.

    Does anyone out there have any words of advice or something to uplift?

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  • Posted

    Hi

    On 1st Jan this year my left ankle was aching. Hobbled about for a few days then off to A&E unable to walk (bank holidays so doc not open). I was advised torn ligument and sent away with crutches. I complained about ache in other ankle and this was put down to putting extra strain due to left ankle.

    The following weekend, both ankles like elephant feet, wrist very painful and swollen finger. Sent back to A&E to be told they think Reactive Arthritis. Given co-codamol and anti anti inflammatory also scans taken of ankles. By this time I have never looked so bad, in agony, took an hour to get off house, crying my eyes out in the hospital (was in pain and they were just looking at me!) hadn't left sofa in a week and had to use a bucket for a pee! Worst experience ever.

    After three weeks sent to Rheumatology Dept at hospital. My GP feared it was the start of rheumatoid arthritis. At this stage I am at wits end - before 1st Jan I was at the gym six days out of seven and I'm 31. Went from really fit to criple.

    Waited one month on appointment. By this time I am determined that thing was not going to take my youth(ish). I went back to my personal trainer and focussed on low impact exercises.

    At hospital had more scans (bones and chest), bloods and urine. Up to high 90!

    All results came back clear, the source will always remain a mystery. They reckon I got food poisoing or a virus Nov/Dec (un-noticed by myself). I hadnt been ill since 2003 but weird I had fever the week before the arthritis hit so I am in two minds as to whether it actually does take a couple of months to surface.

    So here I am, 87 days later. I am back to Body Attack twice a week, LBT twice a week, cycling 50 miles every week and spin/gym in between. I ache still a little in ankle and wrist. They said 3 months full recovery so I am hopeful this will pass but a little sneeky feeling that it may be with me for good now but not the end of the world.

    Yes there is light at the end of the tunnel. As soon as you can get back on your feet try your best to get back to fitness. When I first went back to exercise class I had a corner to myself, I was all over the place - folk couldn't believe their eyes but practice makes perfect.

    I am scared this will return - I take vit c every day and try and have a good staple diet - porridge for my breakfast and mum's lentil soup for tea plus lots of fruit.

    I hope my post has helped, I read 1000s of these to try and understand what was wrong with me - focus on getting healthy and stay stong x

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    • Posted

      Hi there, I have found your post really helpful thank you!  I went from running at least 25km a week and surfing at least 4 hours a week, to 'injured' with both my knees suddenly sore 10 weeks ago.  Went to physio instead of doc, but four weeks later both my wrists, feet, one thumb, now neck have followed.  I teach 5 year olds and it is getting pretty exhausting just keeping going but am going to see a specialist soon and hope for some good drugs.  It's frustrating and scary to be unable to exercise anymore (I'm a type 1 diabetic also so exercise is super important), but have discovered at least that aqua-jogging can really work.  Even swimming or biking I can't do now but aqua-jogging doesn't hurt.  Did you find any other low impact exercises?

      So, thankyou for your hopeful words about return to movement. 

      I am grateful to the other people in this thread too, who are similar ages to me - I am 39, and also mothers (I have two lovely teenagers).  People are brave and get through, which is uplifting.

      Thankyou for sharing.

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  • Posted

    and yes the tramadol - spent many a daze on these things! I stopped taking the pills as soon as I could cope with the pain
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  • Posted

    They say 95% of people lose reactive arthritis after six months. Treatment is given to try and minimise joint

    Damage. There are three brigs they have to try before going on to more expensive ones - sulphalazine,

    Methotrexate and Hydroxichloroquine

    I contracted this awful disease four and a half years ago after a virus infection. My ankle became the size of an elephants and was agony. The doctors had no idea what it was, I was sent for an xray and given pain killers. Over the next few weeks the swelling travelled up to both knees which were unrecognisable and then to my hips. I went to the doctors on many occasions but was just given pain killers until at long last six months later I was referred to the Rheumatologist. Two minutes after walking in he told me I had RA and that he

    could help. I was given a steroid injection, pain killers and sulphalazine. At this time I was screaming in agony, unable to walk or climb the stairs. The sulphalazine made me feel very I'll so had to stop it and went on to hydroxychloriquine instead. I also suffered the red rash on my feet which is a known symptom. I was on steroids for years eventually weaning myself off them as I was worried about my bones.

    Four years later I am not cured but manage it. My knees are ok as is my ankle and the damage is minimal.

    Unfortunately the same can't be said of my hips. I am now awaiting total hip replacement of both hips as

    they are totally damaged. I have had an injection straight into the worst one to tide me over until the first op which has really helped and I still take numerous pain killers and the rheumatologist wants me to take loads more tablets and use a pain patch. The Orthopaedic surgeon says no to bother as they only thing that will

    work is replacement and to do it now when I am young enough to get the full benefit from it.

    It is a nasty disease but can be managed but you need to find the right Doctors and Specialists to help.

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  • Posted

    I am fighting with ReA due to chlamydia infection. Everything started in July 2012. It took me awhile to find a doctor who can treat this. My left foot is swollen and MRI shows fluids within the joints. I also have a pain that migrates around my body. My doctor is treating me with antibiotics and I am also taking sulfasalazine. This is my second week on it.

    Can someone share their experience?

    And how are they feeling now?

    The frequency of relapses

    And can we have a "normal life" with this condition?

    Is this condition temporary of for life?

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    • Posted

      Hi ...

      Will you please give us a update abt ur health?

      I hope u must have recovered. Tc

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    • Posted

      Hello,

      Just wondering if you've gotten back to your normal life and how long did it take you?

      I am on sulfasalazine, prednisone and diclofenac.

      Thanks.

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    • Posted

      Hi ive stopped taking all mu medication sincefebruary im only on alpurinol 300 mg which is a gout tablet and touch wood im loads better none of the tablets i was on done anygood so i asked the doc to stop everything i was injecting once a wk also which did nothing ...ask ur doc to check ur urick acid levil if high ask to go on alpurinol its working for me at the moment
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  • Posted

    Hi, Iv had RA for about 4yrs now after having food poisoning. At the beginning it only affected my knees , thumb and wrist , I was doing alright for a while after being on sulfasalazine and methotrexate for quite a while , I also take tramadol , lodine and amatripteline. In august I had steriod injections in both knees and a about 24cc of fulid removed from one of them , the steriod injections in my joints seem to help me the most for the pain relief .

    I have just gotten used to being in pain so just try and get on with things the best i can I am 33yrs old and my youngest is only a toddler so it can be very hard trying to keep up with her .

    I dont think i have got it under control yet , there was a good few months when it was ok not to much stiffness or pain . Just about 7wks ago i started getting a stiff neck swelling in my feet and ankles so I metioned it to my consultant at my appointment on the 9th of this month, sent for xrays and upped my methotrexate and changed the anti inflamatory i take and iv to go back in 4 wks .

    Since i was there I can honestly say I dont think I have ever been in so much pain , the pain in my neck has travelled down the right side onto my shoulder , my thumb has never been so swollen , cant wear most of my shoes because my feet are so swollen my toes dont even bend . My husband says that Im walking like a penguin lol , He trys to make me laugh because right now i feel like crying most days , I get frustrated trying to do the simplest things . Everything takes so much longer sometimes i cant leave the house for days I am in that much pain .

    When i was first diagnosed I was told because I also have the hbla27 gene that it can take a while to get this under control , but i didnt think after 4yrs i would still me in so much pain .

    Through reading other peoples storys i know there is light at the end of the tunnel its just taking longer for me , so hopefully my next visit to the consultant will be a good one and I can finally get the disease under control .

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    • Posted

      I wonder if women have it forever.  Men seem to get over it.  My grandmother had it and I remember her wearing a wrist brace sometimes, then a neck brace other times...  I've had it now for ten years.  My Uncle has it but his pain stopped.

       

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