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Reactive Arthritis - 2 years- Not going All????

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Vincentworld
Vincentworld

I hope someone can help me here, I am desperate and no where to go.

About two years ago I came down with some sort of urinary infection. I was tested for chlamydiae & Gonorrhea (GC) before going on any medicine. Results, negative.

4 weeks post exposure – started getting joint pain, prostatitis, mouth sore, burning eye, and ill feeling.

Went to Infectious disease physician – he said this sounds like ReA. Reactive arthritis and it will go away. I wish he was right.

Doc, decided to run testing for GC, Urine culture, HIV 1/2, EBV, CMV, RPR, CBC, ESR, CRP, CK, ANA, Rheumatoid Panel, and some infectious stuff.

I was tested for Chlamydia & Gonorrhea of Urine using NAA DNA test. And C. trachomatis, C.pneumoniae or C. psittaci using IGG / IGM. Results: Negative. No post exposure ever detected. Nothing.

Results – Negative.

My blood was spanking clean except high CK Total level. This is 8 weeks post exposure.

Doc decided to give me Doxy 100mg for 30 days, Z-Pack for 30 days, and Cipro 30 days. I took all those throughout 5 month period.

NOTHING HELP.

Joint pain continue and eventually started causing Spine pain and stiffness along with neck pain.

One year exactly, I ask my doc about Flagyl. He prescribe and I took it. WOW, Flagyl instantly gave me pain relief and decrease in symptoms. My physician thought it must be anti-inflammatory effect.

I said what the hell it helps so I keep taking it on and off. Ok so at this point i’m able to control my pain.

However, (present day 1 year and half) post exposure – I decided to see rheumatology who decided to do X-Ray and MRI of SI Joint. Results: Negative, no inflammation seen.

rheumatology is confuse and says I should take prednisone -> Sulfasalsaine -> TNF Blocker.

I kindly told doc, FLAGYL helps. rheumatology says impossible and no such thing.

Here i am today, all my blood work is negative except high CK level (600). rheumatology is asking I get EMG test done next week to rule out muscle disease which he thinks has nothing to do with arthritis pain. Two different issues. 

Over last two years I’ve seen 5 Urologist, Rheumatology, 1 ID doc. None of these guys are able to pin point or cause of triggering bacteria.

Urologist has done prostate secretion for anaerobic and aerobic culture along with urine culture. Results: Negative. No growth.

Flagyl is only antibiotics that helps with all my symptoms but they come right back if I stop FLAGYL even for a day. So I decided to take PREDNISONE to see if it helps.

Could anyone here help me out? How did this immune process start? Is there an active infection? Is this disease like an on switch type?

I am confuse and I am not sure which doctor to see because none of them are helpful.

I don’t mind taking Flagyl for ever / Doxcy.

My ID doc is thinking of trying bacterim ds, he says ReA / AS can be cause by klebsilla bacteria.

MY ESR AND CRP has always being normal and no bacteria was ever found in my urine.

As of writing, I still have symptoms of prostatitis, joint pain, eye pain, ankle, knee, hip, spine stiffness and extreme fatigue. 

I'm currently taking Doxy and Flagyl along with Duexis just to see if AB makes difference. I plan on taking doxy for 3 months before moving on to Bactrim. Levo / cipro i'm allergic to.

What should I do? 

P.S. Prednisone - does not work it makes joint pain worse. 

Thanks

B

2 likes, 32 replies

32 Replies

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  • Littledog
    Littledog Vincentworld

    Posted

    Hi Vincentworld, I sympathise with condition, I am diagnosed with reactive arthritis and plantar faschiatis (I think that's how you spell it), still suffering but told it should have started to clear now... It hasn't, if anything any progress made is in quick decline.  

    Im not not sure how these things work, I was given my diagnosis and pointed to the door but I started with mouth ulcers, fatigue, sore knees and red swollen eyes before the joint and muscle pain went wide spread.  I just cracked on with things and next minute, the pain in my right knee was excruciating.  Went to the doctor and had x rays and all was fine.  Within a few days it was in my other knee and my elbows, fingers, wrists, you name it.  Serious fatigue followed and I was so spaced out I could barely finish a sentence.  Ended up on a walking stick and just normal stuff like cooking and personal care became almost impossible. Back at the doctors they said I had a virus but I insisted on a rheumatology app as it runs in my family and I had had ongoing problems with sore knees for years. The ReA symptoms came first - not sure if that's normal but things had improved significantly by the time my rheumatology app came and I got my diagnosis.  

    I'm almost a year on and so so tired, eyes are bright red and swollen, pain in many joints, just using anti inflammatories and pain relief.  Physio tells me I should be back to normal now, exercise doesn't seem to help and whilst I'm super grateful to have some movement back, I'm just wondering when this will end! I was clear for any infection aside from a slightly raised liver reading so no actual indication of what the virus was and why the arthritis started first,  bit of a mystery.  I'm not sure I have shed any light on your situation I am afraid but wanted to share mine so you know you are not alone and interested in the progress of the thread.  All the best x

  • merrows
    merrows Vincentworld

    Posted

    I am replying because I know the intense lonliness which can accompany illness. I am not a doctor and I cannot throw much light on the medical aspects of what you say but I can say what happened to me. 

    First I found a lot of help using google and reading about what happened to other people. Maybe someone had your same symptoms. 

    I also had a lot of ideas from reading online about what to do. 

    For me, I had severe RA for about two months and the pain was intense. I could not walk without walk sticks for about 3 months. The pain lessened a lot after 3 months and after 6 months it was reduced to low levels. Today, 8 months later the pain has almost completely gone. I have stiffness still in my legs and ankles but the pain is not significant. 

    The level of pain was something I could not have imagined before.

    To try and help all I can is use online resources and try and find someone who had similar symptoms. Then find out what outcomes they had.

     

    • Vincentworld
      Vincentworld merrows

      Posted

      Hi I know too much about spondalythrophy.

      My hips are becoming affected, joint hurts, spine hurts. My entire body hurts. After so much research everyone thinks it's cause by chlamydia and few gI bug not in my case

      I think I may still have the infection causing immune mediated disease.

      I take duexis everyday without help. I've taken do many antibiotics. Flagyk relly helps.

      I have no.swollen joint.

      Just pain in hip, spine, ankle and fatigue along with eye pain.

      From my understanding ReA a chronic form turns into ankylosing spondylitis and this will not go away.

      I'm really thinking about immune supressive drugs but trying to avoid it.

      Flagyl reduces pain but not changing course of disease.

      Apparently I have some sort of infection that is not detected.

      Dies anyone here have prostatitis?

      This disease sucks. No one understand. How can healthy person all of sudden become disable ?

      Doctors are useless all they can offer is pain killer and there is not much they can do other than offer tnf blockers.

      Is anyone taking tnf blocker?

      Anyone have hip pain?

  • nicholas75020
    nicholas75020 Vincentworld

    Posted

    Dr Reiter would probably have the answer, were he alive.

    It seems a far cry from my tangle with reactive arthritis, caused by food poisoning, which was painful, exhausting,etc, but controlled with ibuprofen and whiskey. Eight months on, I feel rejuvenated, and have been on my skiing holiday as usual. I am nearly 70, and feel lucky having read so many awful stories. Has Vincentworld tried whiskey in the evenings, and off to bed with ibuprofen. He plainly has a very much more severe version than me, so ibuprofen would probably not help much, though the whiskey would gently waft him away.

    Medicinally speaking, of course!

    • Vincentworld
      Vincentworld nicholas75020

      Posted

      Yes drinking helps but that is not the solution.

      How do you stop reactive arthritis aka none spondalythrophy from progressing?

      Anyone here have hip pain?

  • Littledog
    Littledog Vincentworld

    Posted

    Yes I have hip pain, but only in the right hip, which is one of the joints affected when my virus and arthritis started.  It's actually worse when I'm still, bedtime is a particular pest!
    • Littledog
      Littledog Vincentworld

      Posted

      Not so I have noticed no.  I had some fluid type swelling on the spine when it first started and just turning over in bed would make the whole thing pop like a xylophone but no pain. I have noticed at the top near my neck gets tight and still pops though.
  • john66751
    john66751 Vincentworld

    Posted

    Hey  just read your post ..not sure how often antibiotics help but saying that   sulphersalazine contains one and I've been on it for 20 years ..one of the least toxic dmard so could be worth a pop 

    strange how steroids don't for you but everyone's different and as for what caused it ...could be anything or nothing lots of people get it with no obvious trigger,but often once the switch is clicked it's a one journey but with the right  meds life can fairly normal 

    general rule is though the sooner dmard  are started the better the prognosis 

     

    • Vincentworld
      Vincentworld john66751

      Posted

      Doc is thinking about Sulfa immuno suppresive as next step. 

      But what is the trigger? UTI??? What bacteria? My main concern is could i still have the triggering bacteria  in uretha?

      I've tried Doxy, Cipro, Zpack, Flagyl, Tindamax.

      I'm thinking of doing Bactrim ds? 

      Aka could trigger event be in my prostate???

      does ReA not go away on its own?

    • john66751
      john66751 Vincentworld

      Posted

      To be honest mate the triggers not massively important once it's started it's started I spent years worrying about that too at first hoping that it was the reason I was still I'll ,but sounds like you've had enough antibiotics to clear anything up

      My first attack lasted say 3 months off work and pain for around a year slow release diclaphenic really helped then maybe a few years later it started in my spine ankylosinspondylitis (spelt wrong ) then my eyes went.. iritis ...sulphasalazie made a huge difference

      I still work in construction at 47 ..even had infections IE food poison which is trigger when on it and I didn't flare so holding the immune system down is the key

      Did stop sulphasalazie last year due to stomach issues flared within a month both knees and spine bed ridden for 4 month ..luckily I found I could take entric coated sulphasalazie it controled my back pain in a month and over the last year I'm pretty good again The chances of it going away if your 2years in I'd say are pretty slim if any ..but I'm not a doctor and that's just my opinion

      Hope this helps I know it's my story but just trying to give you some useful info there

    • Vincentworld
      Vincentworld john66751

      Posted

      I agree. It's been two years and I doubt it will go away. 

      I've heard that after a while this can morph into Anklyo Spondalytitis? Do yu know anything about this?

      Now you mention you took sulphasalazie  and feel better. How long did you take before you realize this is what is helping and also did you stop and the disease went into remission or you had to continue to take it?

      My doctors also agree that with Doxy & Aizhtro, they doubt anything could be hanging out but who knows. 

      I have this awful prostatitis symptoms which is very annoying I'm thinking its more of an imune system reaction than an actual infection.

      Beacuse an actual infection I'm sure they would be able to culture it by now. Also, my spouse has not UTI / no pain nothing. So not sure what that is all about. 

      However, I do know that by taking Flagyl my UTI / Prostatitis are greatly improve along with other ReA symptoms. However this is short lived while on Flagyl - once I'm off everything just returns. This also makes my doctor think that it cannot be an infection and that Flagyl is acting as anti-inflammattory. 

      I have been to countless physician and none of them know what to do besides taking immuno suppresive drug. 

      I'm at a point just asking my rehummy for immune supression drugs. 

      My doctor will NOT give me TNF because I do not qualify for it due to negative MRI / SI join and Negative HLB 27 gene. 

    • Littledog
      Littledog john66751

      Posted

      Hi john, what do you mean about the eyes started? I am having murders with my eyes.  Initially it started with just swollen eye lids but now it's general puffiness, redness, can't look up, watering and tiredness.  It's got to the point I am thinking of going back to the GP although I am reluctant as I don't expect they can help.  Just using drops at the moment. 
    • john66751
      john66751 Vincentworld

      Posted

      Yes as said on my last post I have ankylosis spondylitis came on 3 or 4 years after the arthritis  plus had serious iritis almost lost the use of an eye as the steroids were given at to low of a dose ended having injections through my eye ...but bizarrely that stopped about six years ago and hasn't came back 

      There are meny drugs to try before TNF it's expensive so even though I've the hlb-27 gene I've got no chance till every other cheap drug fails 

      most rummys seem to lean towards methotrexate as a starter dmard these day I tried it found injections were better it worked but made evil so had to stop before the girlfriend dumped me lol 

      sulphersalazine like most of them takes at least 6 week to 3 months to kick it and it's will slow the progression a lot amazing on my back stopped the pain after only 5 weeks  least toxic of all the old dmards and it's been around forever so really safe I  also have blood tests 6 monthly  plus with sulphersalazine you can still drink on it and have kids ..well it's meant to lower your count ...but got 1 and another on the way so not in every one I gues 😀

    • john66751
      john66751 Vincentworld

      Posted

      just re read your post ...I stopped taking once and pretty much had the worst year of my life flared in about a month never had pain that bad a for so long both my knees went couldn't walk back went was swigging moraine from the bottle and it hardly touched it almost pushed me over the edge ...ill never not be on a dmard ..have stomach issues now so my rummy suggest I stop for a month and see if it that ..told him p*ss off as he wasn't offering me an alternative drug in the meantime 

      cant go though that again when I don't need to 

    • Vincentworld
      Vincentworld john66751

      Posted

      So your reactive arthritis did morph into AS. This is what i'm saying. You have HLA b27 gene. I am negative HLA b27 so why am I progressing?

      I have normal CRP and ESR but massive spine and costohendritis pain which radiates to my lower back and kidney area. This is inflammation doing all.

      Is Slphersalazine only drug u take for AS?

      I don't think my wil go away. I've been on doxy right know for over a week and no relif in prosate so doxy won't help.

      I want to know what bug did this so I can stay away from this bg.

    • john66751
      john66751 Vincentworld

      Posted

      Um my rummy seems to think it may most studies are inconclusive and the others Arnt meny to , but I can tell you it really really helps me

      So if you rummys up for it could be worth a shot

      Biologics probably have to wait awhile I've had mri s that shows a fair bit of damage and never been offered them ...to expensive I guess

    • Vincentworld
      Vincentworld john66751

      Posted

      My doctor is wanting to move straight to TNF. Waiting for humira to be approved. I will not delay in taking Humira. I'm at a point where pain on the spine comes and goes. 
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