Reactive Arthritis help - sorry its long.

Mummyof3
Mummyof3 Member Posts: 18
edited 19. Jan 2013, 10:27 in Living with Arthritis archive
Hi everyone,
I'm new to this forum and hoping that you can all help me. I'll start at the begining and if I miss out any things you need to know then just ask.
My name is Leanne and im 34yrs old with 3 children under 7yrs old.
I was perfectly healthy up until April 20th 2012, and then I developed pain in my feet. By the next day the pain had gone up through my body, knees, hips, wrists, shoulders and neck making me unable to move and in agony. I was taken to A&E and admitted into hospital where I stayed for 5 days.
I had numerous tests and bloods done and was put under the care of a Rheumalologist who diagnosed me with ReA and I had fluid on the shoulder. I was put on Naproxen, cocodamol and Predisinole for 2 weeks, and given an appointment for out patients. Pains were still severe so they upped my steriods and I continued on them for a further 10 weeks.
At my next appointment the steriods were still not having any affect so I was changed onto Sulphazaline,(weaning off steriods and onto Sulpha) gradually building me up to 4 tablets a day.
In August (approx) I was pain free and I asked to come off the tablets. I was reduced down to 2 tabs, and all my pain came back as bad, so I was put back on the 4 sulpha tablets.
This time though i developed more symptons especially in my hands and feet, so I was increased up to 6 Sulpha tabs and my Naproxen was changed to Arcoxia 90. I have had a hand scan and more blood tests but they all show nothing.
I also had a steriod injection in my bottom as I had multiple joints with pain, but that gave me no relief either.
I know im still in agony and the Rheumalologist says I just need to keep taking the sulpha and Arcoxia. Surely there must be someting else as it doesnt feel like its improvong at all.
Im wondering if they are missing anything or can test me for something else because I know im in pain but there is no evidence in any test results.
Any help please.
Thanks

P.S- I diagnosed myself with the Fifths Disease after my children had 'Slapped Cheek'. When I asked my consultant to test me for Parvovirus B19, it came back positive. So that's how I had Reactive arthritis.

My palms and the sole of my feet hurt too.

Comments

  • stickywicket
    stickywicket Member Posts: 27,102
    edited 30. Nov -1, 00:00
    I’m sorry you’re having such a tough time of it, Mummyof3, and with three small children it must be difficult.

    You have had a lot of tests done and are under the care of a rheumatologist which is a good thing. Many people have to wait a long time before that happens. However, the fact that the meds don’t seem to be working well enough doesn’t necessarily mean you have some further, underlying, condition. The person to ask would be your rheumatologist.

    You say you felt better in August, came off the meds and then felt worse again but worse than before and that now the meds weren’t holding it. Arthritis is like that. It lulls us into a false sense of security then bites back. It’s a good thing to try to reduce the meds, with your rheumatologist’s blessing, but that does give it the opportunity to strike back as yours has done. It might be that you need to up the sulph a bit more to knock this thing on the head but, again, only your rheumatologist can decide. The fact that the bloods show nothing doesn’t always mean a lot. Many on here are sero-neg but still have arthritis.

    As I said before, it’s tough when you have young children to deal with. Your GP can give you stronger pain relief but, if the disease itself is active, it’s the rheumatologist you need to see. I hope one of them can help you.
  • Mumof1
    Mumof1 Member Posts: 42
    edited 30. Nov -1, 00:00
    I'm sorry things are difficult for you at the moment, I agree with what stickywicket wrote about a false sense of security, Iv'e had a lot of times like that.

    I also have an 8 year old daughter who is very demanding so I can imagine just how tough it is having 3 children.

    I hope that you feel better soon xx
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Hello mummyof3
    You are going through it, and I really do feel for you having to look after the children.
    Sorry I cant really help with the meds..I have OA but I understand how awful the pain can be, I would keep a diary for your Rheumy,make sure you log everything down.
    I do hope you can get some relief very soon, it will help having us to talk to....so stay with us then we can support you.xx
  • villier
    villier Member Posts: 4,426
    edited 30. Nov -1, 00:00
    Hi and welcome to the forum, sorry to hear you are having a tough time at the moment, sorry I can't help as it's OA I have and being Christmas things have been very quite, stick around I'm sure there will be some more peeps about soon that can help you, nice to meet you hope you managed to get through Christmas with the wee ones...........tc.............Marie xx
  • frogmorton
    frogmorton Member Posts: 28,076
    edited 30. Nov -1, 00:00
    Hi there Mummyof3

    Good to see you, but sorry you ahve needed to find us. I hope that you ahve support at home with the children.

    Gosh you do sound to be having a hard time of it. Can I ask are you on pain relief in addition to the arcoxia?? That might help a bit and have you an appointment due soon to see the rheumy or rheumy nurse? If so you must be honest with them and tell them just how bad it is.

    I always recommend taking someone with you who knows how bad it is and who you can trust to A) back you up and B) remember stuff for you.

    If tehre is no appointment imminent then I suggest starting with the GP and doing the same.

    Love and ((()))

    Toni xxx
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Hi and welcome from me. You've had some really good advice there, sometimes it does take a while for the meds to take over the arthritis. I hope things settle soon as Toni says, go back to the medics if you feel it isn't happening. There are lots of treatments for arthritis and sometimes it takes a while to find the one that works best for you. Good luck, we are all here to support you, it sounds like your arthritis has been a traumatic affair for you, especially with such a sudden and dramatic onset. I hope it settles and you get some relief and control very soon. LV
  • Mummyof3
    Mummyof3 Member Posts: 18
    edited 30. Nov -1, 00:00
    Thanks to everyone for making me feel welcome and for your replies. Im sorry to hear about all your pain and aches too and hope they havent bothered you much over the Christmas period.
    I have spoken to my consultant today and I have been referred for a full body scan as he doesnt know why Im not responding to the sulfazalaine (im on the maximum number of tablets 6 per day) so they wont up them any more. I am taking 30/500 co-codamol tablets too which I try not to take often as I need to have a clear head for my line of work :-(
    The consultant said that because they found no inflamtion on the ultrasound then they cant change my medication for stronger tablets, as there is no evidence at the moment of the pain Im having.
    Has anyone had this reactive arthritis? and did it go as quick as it came?
    Thanks in advance for your help and support.
  • stickywicket
    stickywicket Member Posts: 27,102
    edited 30. Nov -1, 00:00
    A bit of a mixed appointment then. The scan is a good thing but it looks as if you'll have to stick with the sulph and hope it starts to work better.

    I've no experience of Reactive Arthritis. From what I've read, it is supposed to go away but in its own sweet time.

    Let's know how you get on with the scan.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hmmmmmm, a mixed bag indeed. If it is Reactive Arthritis then its causes are different to the other auto-immune beggars and will need a different treatment plan but what that involves I don't know. It could be that they couldn't see inflammation because the sulph is being effective (but maybe not enough?). I understand from what I've read on here that RctA does clear in its own time (and may return when you catch another bug).

    The good news is you have been referred for another scan, a different type and that may well show the cause behind the pain. Keep in touch and let us know how you are getting on, yes? DD
  • Mummyof3
    Mummyof3 Member Posts: 18
    edited 30. Nov -1, 00:00
    Apparently its usually mild and lasts 3-6 months but I was admitted to hospital with it and now its been 9 months. I know they say that the Sulpha takes time to work but am I expecting too much even after being on them for months? Some times I feel like they think I'm making it all up when the bloods come back showing nothing.
  • Mummyof3
    Mummyof3 Member Posts: 18
    edited 30. Nov -1, 00:00
    Yes I will do. Ive got an appointment for the consultant on the 18th but not sure how long I need to wait for the scan. I will keep you informed.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Everyone is different in how they are affected by their version of arthritis - a norm does not exist. I've been on sulph for ten years now, it's never tackled the arthritis but it does help my psoriasis, for others on here it sorts their gut trouble.

    OA is not an elusive arthritis but the others are and are therefore harder to deal with for both us and the docs. They know you're poorly and not making things up, don't fret about that. DD
  • lyndsay33
    lyndsay33 Member Posts: 1
    edited 30. Nov -1, 00:00
    hi i just want to tell you i know how you feel! i have 3 children and a 14 week old baby and one morning in the beginning of december i woke up and could not move! my shoulders, neck, elbows wrists, knees, ankles toes, every joint was in absolute agony, and by agony i mean ive had 4 kids and would go through childbirth rather than that! the pain was excruciating and i was as stiff as a board. then the next day all my joints swelled up and i spent a few days in bed. after managing to get to a doctor my bloods revealed a sedementation rate of 50 and they decided i should see a rheumatologist urgently, and thank god i have my appointment tomorrow. i waited 3 weeks for this appointment and feel blessed. i should mention the rheumatoid factor in my blood was negative so my gp is thinking reactive arthritis. i also think this because slowly im getting better. i still have aches and pains but very low grade compared to the onset. also the inflammation rate in my blood is going down and i also dont feel as tired, feel as though my joints are slowly recovering. but its also worrying as i know you can just wake up to this when it decides its coming back. im so lucky my partner was off work as i couldnt even lift my wee baby up and spent every night in excruciating pain, crying, and at one point at 3am even phoned an ambulance as i could not move an inch! ambulance refused to come for me as i wasnt deemed an emergency. i honestly didnt ever think i would get better but (touch wood) since my last flare on xmas day (which attacked my wrists and left me with carpal tunnel) i feel so good :) like i say i have a few remaining niggles but absolute nothing compared to the onset. i should mention prior to me waking up one day with this i had bad tonsilitis and a urine infection, also a dodgy curry, not all at once lol, but over the space of 3 weeks. these are all trigger factors of reactive arthritis. but hopefully tomorrow the rheumatologist will give me an exact diagnosis....does anyone know what i should expect at my 1st appointment with the rheumotologist?

    so mummyof 3 i really hope youre starting to feel better by now, and trust me, i know exactly what youre going through. im only 33 and felt 83. my heart goes out to all of you here who go through that everyday. i just wouldnt have the strength for that cause 5 weeks of it nearly killed me! mentally, emotionally and physically. :(
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hi, Welcome mummyof3, what sticky has said to you is right, your having lots of tests and your in the best hands being under a Rheumatologist it's a case of wait it out and see what the test results show.
    Having 3 kids under 7 is going to drain your energy!! You should change your username to supermummyof3 !! Stay positive and hold out till you appt on the 18th January. You joined the right forum for support mummyof3. Welcome again.
  • Mummyof3
    Mummyof3 Member Posts: 18
    edited 30. Nov -1, 00:00
    Thanks to everyone for replying. Lyndsey33 I really feel for you and hope you soon find relief.
    I'm waiting for my appointment for the scan and I have my rhemotologist app on Friday. I'm going to ask him about cutting out certain foods or what excercises may help.
    The pain in the bottom of my foot has definately got worse and now it throbs even when there's no weight on it- it's all under my big toe..has anyone had experience of what this could be, as its a new symptom in the last couple of months.
    Hope you are all not to bad with the cold weather x
  • stickywicket
    stickywicket Member Posts: 27,102
    edited 30. Nov -1, 00:00
    I hope the rheumatology appt and the scan both go well.
  • Mummyof3
    Mummyof3 Member Posts: 18
    edited 30. Nov -1, 00:00
    Hi all, we'll I was meant to see my Rhuemy app today but it was cancelled by my consultant because of the snow :-(
    I now have to wait until the 28th, I know it's not that long away but my shoulder and elbow have been really bad over the last couple of days as well as my thumbs and knuckles. I don't suppose the weather helps or is that just a myth? :cry:
  • stickywicket
    stickywicket Member Posts: 27,102
    edited 30. Nov -1, 00:00
    I'd guess there'll be a few people with cancelled appointments. 28th isn't too long to wait though it will seem so if things are playing up badly. Weather? It's a moot point. My RA doesn't seem to mind cold at all but it hates damp and extreme heat.
  • Mummyof3
    Mummyof3 Member Posts: 18
    edited 30. Nov -1, 00:00
    Yeah that's true. I wouldn't have thought the heat wouldn't affect it but I went to Spain on holiday this year and I was in agony. I phoned my consultant from Spain to book in with him on the day I came back and I had a steroid injection but it didn't have any effect :-(
    So I'm on the count down again for my next appointment, ill let you know.
  • stickywicket
    stickywicket Member Posts: 27,102
    edited 30. Nov -1, 00:00
    I've always suspected the real problem is humidity rather than just heat but I still react badly to it :)

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