my reiters battle

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I just wanted to say hi to any other Reiters or RA sufferers and share my experiences so far.

My story started in Nov, I got Salmonella from aeroplane food on my way back from Thailand, after 2 weeks of bad salmonella (nearly hospitalised twice) I started to have problems with my ankles, they swelled up and were hard to walk on... then my eyes went a bit wrong... and then the worst.. I got sores... down there. :-(

Luckily, I'd already come across Reiters when researching Salmonella online, I suggested it to my Doctor, who tested me for HBA-27 (I think that the correct thing) and agreed.

I've had courses of anti-biotics that cleared up all the other symptoms (thank god - no more sores... down there) and been on Diclofenac Pottassium for a couple of months while waiting for my referral to the Rheumatologist.

My symptoms got worse when they tried moving me to Tramadol (after some side effects from the Diclofenac) so I had an intra-muscular steroid injection... which worked wonders! Until it wore off a couple of weeks later, I'm better than I was though.

I got moved onto Diclofenac Sodium, which helped, finally saw the specialist who put me onto Prednisalone (steroids) on a reducing dose, this was like a new lease of life!!!

The swelling around my ankles has gone, they feel almost nomal now. My knee still feels stiff if I walk or stand up for too long.

My dose is down to 15mg and sadly my feet are now getting worse. My index toes are swollen so much they dont bend and its getting hard to walk, do I go back to my doctor or wait 3 weeks for my next rheumatologist appt?

I've had times when I felt quite down about it all.

Sadly my friends husband just got diagnosed with head and neck cancer - it all snapped into perspective for me.

Yes it sucks, yes I don't know when I'll be better... but it's not going to kill me.

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12 Replies

  • Posted

    Keep your chin up, it's really important you fight this thing with all your might. Pls refer to the message at the top of the forum from Jason back to myself, as he is going down the natural route and it's paying dividends... a pint of green juice everyday, (you'll see the contents), keep low fat diet, stay away from processed foods etc. You can read my story from Jason's communications trail. I'm feeling better now after 6 wks of RA, but I'm not counting any chickens yet !!, as i have had good days, and then when i decide to do something, like take car 5 mins to somerfield, for 3 things, I'm done in !!. You will get over this thing. I hope to go back to work in 1 wk time. All the best to you.
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  • Posted

    I felt I owed it to this forum, which really helped me, to report back on how I am now - a year later.

    In May/June after going back to the specialist, I stayed on steroids for a bit longer and started swimming to build my strength without damaging my joint - I set my goal as a local charity swim (1.6miles in the sea) for the end of July.

    My first swim in the pool, was hard. I managed about 20 lengths but luckily went with a friend as I found it hard getting in and out - in 6 weeks I was up to 100 lengths and feeling so much better.

    1 week before the swim, my doctor gave the ok, I think he was surprised at my progress in the previous month or so.

    I'm pleased to say I swam it in one go and raised around £450 for the Heart Foundation.

    My joints have been mostly ok since, with just the odd twinge in my foot and ankle when its cold or I walk/run a bit too much.

    For me, the removal of fluid from my joints and the steroid injections really were the turning point and having the swim to train for.

    I wish everyone all the best for 2009 - if you'd like to contact me, there's a link to my blog on my profile.

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  • Posted

    Hi,

    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, my experience is above, there's also more on my blog (link on my profile).

    I'm fine now, very occasionally (couple of times a year) get a stiffness in the knee that was worst affected.

    I've found vitamin B12+6 helped me loads to keep it at bay, this might be more related to salmonella being the source though, I have no idea.

    Also the only thing that really helped me was the steroids.

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  • Posted

    Thanks for answering! Could you please send me the link to your blog or profile? I am having difficulties navagating on this site. Thanks,
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  • Posted

    Hi both,

    You can set up your profile by clicking the link on the tab where you sign out. You need to select whether you want it to be viewable by other users (registered only) and clicking on the username will take you to the profile. You can also use the messaging function to send links etc.

    If you are having any particular problems with the site send me a message and I will try and help. We are in the process of rationalising the topics to try and make navigating easier but it will take a while.

    Hope this helps.

    Alan

    Emis Moderator

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  • Posted

    Dear Moderator, thanks for suggestions I followed them and fixed my profile.

    Dear alukeonlife, Thanks for sending the link. How long did it take you to fully recover?

    thanks,

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  • Posted

    Once they knew what it was and I had the fluid removed and got onto the steroids about 2 months. I was almost unable to walk the swelling was so bad, so I think I had a really bad case.

    Ironically I'm actually having a flare up at the moment, some joint stiffness in the knee. Luckily, the doctor prescribed me a box of prednisalone so that if/when I had a flare up I can just start taking a reducing dose and then book an appointment. (In case you were wondering it's been 20 months since my last flare up)

    For me the fix was: fluid removed, steroids, vit B6+12 + swimming.

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  • Posted

    Hi Alukeonlife, Sorry to hear that you are going to a flare up right now. I am with you on this one. I was wondering if you have learned what triggers your joint stiffness. Also do you take something to fortify your bones from prednisalone? I have also learned to take a long period of antibiotics, six months, has shown to help and in some cases eradicate ReA from the body. Have you heard of this? I am on a long treatment of antibiotics. I have noticed that the swelling on my ankle has come down a lot, but I am still having issues on my tendons, which have been the most affected. I also have some lumbar and cervical pain on my spine. I was wondering if you feel or felt some pain migrating in different parts of your body. I do.

    Please check and see if you can take some supplements such as vitamins D and calcium so you can counteract the side effects of prednisalone. How often to get a MRI on that knee, you should do it so you can see how your bones are doing there. Checking this avoids long term conditions or damages. Please keep us posted how you are doing. I am now following on twitter and on your facebook fan page. I think you have a great story to share. Keep up the good work. You are a true warrior, a true luchador.

    A big Hug!

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  • Posted

    Hi Alukeonlife, I haven't heard from you. I hope you are doing well.Please keep us posted. Thanks,
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  • Posted

    Sorry, been busy. I'm only on Pred. for a week at a time, the last flare up was a long time ago so I'm not too worried about the effects of pred. I do take a multivitamin most days, through process of elimination I worked out I needed more B vitamins.

    Not really my thing to take drugs generally, certainly I wouldn't want 6 months of antibiotics. My doctors don't really know much about ReA I don't think. Anyway, I cycle/swim/surf a lot n eat well so tend to avoid drugs unless I really need it! Never MRI'd my knee.

    Causes... hmmm I think mild food poisoning (the last flare up was at a festival) is the main one for me. The flare ups are really small compared to the first time, so once you're out of that it's fine.

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