Sexually Aquired Reactive Arthritis

Posted , 22 users are following.

Hi,

I am wondering what the symptoms of sexually acquired RA might be and can you get it from Oral sex. I thnk I have them but my doctors insist not. I first had joint pains (elbows, ankle) in Sept 06, then have had at various times sticky eye, mouth inflamation, slit tongue, prostate/testicle/penis burning problems, itchy/flaky skin, chapped skin on knuckles - currently have bad ache in lower back, joints ache in big toe, knees, ankles and fingers/wrist and kneck beginning to go. Still have sore/tender genitals, mouth inflamation and really tired.

Have had so many STD tests, Gon and Cham neg (inc blood antibody test for Cham), HLA 27, stools, rheumatoid factor, prostate infection etc etc and all neg. At leat 5 different types of anti-biotics (and just started another 6 six week course) none seem to really be doing anything.

Any ideas/help?

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  • Posted

    Hey lads, 

    below is the full PDF documentation of the trial done for a CURE in Re-A. 

    It also explains how they found bacteria on people that had the desease for over 10 years. 

    http://health.usf.edu/nocms/publicaffairs/now/pdfs/Carter_Arthritis&Rheumatism_May2009.pdf

    Also may i ask you all, what are your sympthoms in details and how long have you had them for?

    Max

    • Posted

      Hi Max....but this practice is not being followed anywhere....because the trial is not approved till now...
    • Posted

      Because of the trial design, we have no data to

      address whether combination antibiotic treatment would

      be effective in patients with undifferentiated SpA who

      are negative for Chlamydia on PCR testing.

      This is me I think. I test negative to chlamydia now. For some reason my reactive arthritis persiteted after taking azithromycin . I actually took it again thinking I had a STD. they test my blood after azithromycin and chlamydia didnt show up again. Urine and everything went back to normal but I still got reactive arthritis.

    • Posted

      Hi, That is were the confusion occures. I have tested negative and do not have Chlamydia. All my std testing have been negative.

      With that said I've been on multiple antibiotics without much success. 

      But still, you can't keep trying Abx until you know what it is. 

       

    • Posted

      Did u have a Chlamydia antibibody test?

      It may be possible that u r clear of Chlamydia for now...by urine test....

      But if u ever had it ...it may persist in the joints and cause the arthritis....and will not be diagnosed by urine tests...best way it pcr of synovial fluid/tissue...it will confirm whether the bacteria is present in joints

    • Posted

      There is a group in Facebook....reactive arthritis / Reiter syndrome do join...there are so many ppl whocan help
    • Posted

      cool I will ask my doctor. I found a good GP who is going to help me once I get my shoulder fixed. I will ask about pcr of synovial fluid/tissue tesing. I would just be happy to know if I have chlamydia in joints or not.
    • Posted

      I had all the Chlamydia IGG/IGM test negative. Never had it. 
  • Posted

    Lads,

    will you tell me what are your sympthoms

    and since how long you had them?

     

  • Posted

    Hello sometime ago perhaps 5 years ago came across a suggestion that if you have Reactive Arthrihtis one should go have an HIV test as the virus is blood borne and with oral sex there could be a connection with Reactive Arthritis I did go have myself ckecked for HIV I was cleared. when I first became infected with Ritiers / Reactive Arthritis it was difficult if people had it they talk about because if you did people thought ypou were some kind of low life but l belive in most cases peoples morals are  good just at the wrong place or time with someone they didn't know and that person didn't know they were the carrier of this virus now 50 years latter since my contact with Reactive Arthritis there is this wonderful site from the UK that can assit people through communication not to feel so hopeless. Blessin R Canada
    • Posted

      I am HIV negative and I think I got chlamydia from oral sex I believe. I asked a doctor if you could get STDs from oral sex without a condom. when I was 17 years old. What good advice he gave me because he said you can't. So I had unprotected oral sex thinking it wasnt much of a risk. I still get upset with poor medical advice because of this. Its depressing that some doctors are so stupid. I am just glad I dont have HIV and can probably say that I am a very lucky in some ways I didnt catch something worse. Bacteria definatly caused my problem, there is no doubt on that but I guess certain environmental or gentic factors set you up for the possibility of a long term problem. Physical trauma to my spine is what progressed it or even triggered a reaction. It makes sence to me in a lot of ways. I just dont know if its still bacteria or auto immune. I guess once I get my joints tested then I can see, but its feels like its more than just my joints.
  • Posted

    I have a similar type of story with vincentword . Although they can not find anything wrong with me except high crp level in acute disease. I firmly believe it is because of the chlamydia bacteria likewise in most cases of venereal involvement.  It can not be easily  detected in urine or from blood. Actually,  it can be detected from synovial fluid of the joints as I searched. However, once it triggers the immune system it does not matter. Also with HLAB27 positivity make the prognosis worse.Though I have it, I did go into remission once for 6 months. It feels like you are in heaven. Now I am in a middle of a  flame and also diagnosed with early sacroilitis. I feel mild pain in my feet, knees and back.  I am using sulfasalazine and diclofenac to protect the joints and to go into remission for the second time. There is an alternative therapy with long term  combination of antibiotics treatment in the late literature. There are some protocols and sites mentioning it also. I will give a try if sulfa drug will not work.

    I am really firghtened but the war still is on.Keep fighting guys and hope to hear good news from you all.

    • Posted

      When you went into remission was it completley gone? was there anything different you were doing or just happened? How was your diet? I am glad you got some time in heaven and hope it goes completley for you. Did anything specific flare you back up?

      did you have unprotected sexual contact prior ReA and notice std symptoms within 2 weeks after? 

    • Posted

      I noticed slight burning pain and darker urine when I had chlamydia. When I took the tablet to get rid of it my urine cleared up in colour. I even noticed when I handed urine sample when I had chlamydia It had tiny particles in there. Probably the bacteria. Now when I get tested I look sometimes and it looks normal. I recon I dont have bacteria anymore unless it is in my joints and not my blood now
    • Posted

      Hi Jay. Yes it was completely gone. I was totaly pain free in remission. I like to run and so I was running 5 kms at weekends. At that time I was using meloxicam and simple muscle relaxants. I have been working as a teaching assistant at a university. I did nothing special to cure myself just it was a very tough time at work and it was the beginning of the summer. I was very active both mentally and physically. May be it was just because of  the seasonal effect or my condition is the one with the recurring type .

      I did not have a special diet and I dont like junk food to mention. Only I ate lots of nuts and chew some raw ginger.  I really do not know still the reason of the remission . I thought it was completely gone for gods sake but unfortunately not.  However, even in the beginning  my symptoms were mild only  heel spurs in two feet,pain in the right knee and uti symptoms like frequency and burning. Therefore, it took 1 year   to  a proper diagnose  of my condition although they suspect rheumotoid arthritis. 

      Again yes, the initial setting and my symptoms began after 1 month of an unprotected  vaginal sexual contact. First my urologist diagnosed me with epididimis ( sorry for the spellings) and then with prostatitis. When I told him I have pain in my feet and knee , he suggested to see a rheum doctor. The rheum suspected from some kind of arthritis but the strange thing according to him I did not have any sweeling and conjuctivitis for to diagnose me with reactive arthritis. Then another rheum guy diagnosed me with reacive arthritis.They look for everything, urine cultures, sperm cultures, chlamydia pcr test from urine, mycoplasma and ueroplasma, brucella and nothing came out positive except HLAB27 and high CRP.

      Now I am in a middle of a flame. I have got a severe pain in my heels because of the heel spurs I guess, mild knee pain and mild uti symptoms. In addtion this flame starts like I was again infected with an uti like pain in testicles, burning and frequency in urination.

      My rheum thinks my situation as easy to be cured but I dont think it is so easy after 18 months. There is still a chance but is getting lower day by day.   Furthermore we still dont know the infecting agent. I also give up taking sulfa because I got a flu. 

       I am frightened of being disabled and losing my job in an early age of 29. I hope it will be completely gone for everbody suffering from this terrible disease. Sometimes we  make mistakes but there is no turning point in this.Thinks getting harder I can not concentrate easily and it is very hard to do simple daily chores though I can still drive a car. I can not stand still so long my feet aches.  How you feel now ?

    • Posted

      Jack,

      Consider yourself lucky went into remission. This did not happen to me. I got massage then stupid me got a HJ - yup, you read that, just a HJ with oil. Nothing else. 

      Next day started getting UTI symptoms, - took doxy and was tested for g&C negative urine PCR test.

      4 weeks later got ReA symptoms, this is goign on and its 2 years it has morph into Spondalytitis. I get severe spine pain.

      Do you have any spine pain? SI joint Pain?

    • Posted

      No I dont have any pain in SI and spine pain. I ve even diagnosed with early sacroilitis. Only heel and knee pain. Pain moves around my body actually rarely in my fingers and neck also.

      Doc wants me to use sulfasalazine at least for 3 months. Then he ll decide to continue or he ll come up with an alternative.

      His response and attitude was strange. He just advised me to swim and take the pills. Also he acted like it's child play and told to me nothing to be afraid of. I am not that optimistic though. Mine is also getting chronic I feel.

      How you feel now? I know your story. I acted like nothing bad will ever happen to me and there are the results. Will you consider taking TNF? I read about its side effects. It is am important trade off to use it in my opinion. Keep giving info about your condition. Don't lose your hope I am trying.

    • Posted

      I've seen totoal of 2 ID doc, 1 PCP, 5 Urologist, 1 Rehummy - None of these iditos have a clue what to do, except Rehummy.

      They all tell me we will never know the outcome of this disease or what the triggering agent was. Do I stilll have the triggering agent???No one knows. 

      Rehumy, says take TNF and live with it. 

    • Posted

      Have you ever tried dmards like sulfa or mtx? They will affect slower but with lesser side effects.

      I really wonder if anyone get benefited from DMARDS or TNF blockers in the forum.Just inform us about TNF blocker if you are planning to use it. which one did your rheum doc suggest? I really wonder the outcomes .

      Hope it will bring you a prolonged remission without any side effect. I think I cannot afford them now . I both afraid of the side effects and I am not able to get them bacause of health insurance problems.

      We all have to learn with tihis and to manage it in some way.

    • Posted

      Jack,

      Humira is what my doc said. He said sulfa and methtraxre sp? Is only good for peripheral pain not for axil. Humira works for that.

      Do you know if u still have the triggering agent?

      What have u test for?

      Have you taken any antibiotics?

    • Posted

      I took doxy, cipro, bactrim each of them for two weeks only.  I never know what cause my situation and never know still I have it. 

      They look for everything, urine cultures, sperm cultures, chlamydia pcr test from urine, mycoplasma and ueroplasma, brucella

      All the tests came out negative 

      I understand. did you take humira yet?

      Also any of you guys feel dizy and have heart palpitations??? Is it bacause of the condition  or the side effects of medicine? I feel very dizy nowadays .

    • Posted

      Jack, 

      We have the same thing for sure. They did everything on me, immune test, urine culture, chlamydia pcr, semen culture, prostate anarobic aerobic , nothing. 

      I've taken Doxy, Azithro, Flagyl and Cipro and Mino (recently) Nothing. 

      2 years later I still have active ReA with burning after urination stinging feeling, spine pain, joint pain etc....

      I was setup to take Humira but backed out...but this time I am going to take it. Nothing is helping with inflammation. I've taken prednisone it helps while I take it then it stop.

      The heart palpitation you mention is because of ReA. I have those and I started seening a cardiologist for it. There is nothing you can due this disease causes inflmmation. 

      Did your doc ever suggest Humira?

      Do you take painkillers?

      How long have you had this condition?

      Any stiffness in the back?

      On paper I look perfect, not a single positive test. But, what you and I may have is call "Seronegative Spondalyarthrophy"

    • Posted

      No stiffness in the back. My doctor haven't suggested a TNF yet.

      I only took a multivitamin a day and 2 tabs of diclofenac. I got a flu so had to give up sulfa.

      What did your cardiologist say about your palpitations? I also consider to see one. Do you take a drug also for it?

      I am feeling low and dizzy these days.

      Inform us when you ll take the TNF.

    • Posted

      I ve had it for 18 months and one time in remission for almost 6 months.
    • Posted

      Hey dude. You didnt make a mistake. Sometimes things can just happen. I use to blame myself but its not your fault that your sick. If anyone tells you that which some people have said to me they are very wrong. This sort of thing just happens even from food poisoning. Its just that they don't undertsand. Thats why people cant help us. They just dont understand.

      I went to university too when I was really really sick. I couldn’t stand sitting down in lectures. It was so bad having to sit quietly in pain trying to concentrate for 3 hours straight. I seriously don't know how I did it. I think making myself do it helped me to get better  but sometimes I felt like I couldn’t sit any longer or I would explode.

       mine never went completely. It was in the background for a while. it can fluctuate at any moment. My stiff neck can suddenly appear from a sudden movement or when I wake up but I always have sore muscles deep down even if my neck doesnt go stiff. It can last a year or a few months the stiff necks. Or whatever it wants. I believe it could be different for everyone just like our fingerprints are all a little different. We would all be going through similar feelings though. I believe that even people with other illnesses would also get similar feelings. My symptoms have been like chron’s disease or dizzy verdigo. I believe even mood swings. Do you guys get mood swings from ReA???I get really angry sometimes. Sometimes I wake up angry. Every few weeks or months. Some people have commented on my anger and that they feel a little scared. I had every reason to be upset or angry but I raged to the point it is unacceptable. I just don't know why I do it since I got sick. I have been trying to meditate. I dont really get depressed much. I just get really anxious and angry sometimes. DO you guys suffer from similar symptoms?

    • Posted

      I noticed I get mood swings from celebrex
    • Posted

      I have had verdigo dizzy like symptoms. It could be the drugs too. Its either ReA or the drugs. try to take notice. I take celebrex and notice ringing ears etc. I stopped taking it now cause it feels like it makes my neck worse. I am not sure cos I have had frozen shoulder and its hard to know what is happening to me. I just listen to nirvana. Kurt cobain had a similar illness chron's. Lots of successful people have had reactive arthritis. Curt cobain was messed up. I really wish he found good care. I recon this illness might have pushed him too far being famous to the world and didnt want to let his fans down. He had neck pain also and couldn't hold his guitar. I recon he might have had reactive arthritis because he was never really diognosed. He probably coulndt handle being sick and famous. He had other issues but you hear him talk about it in his interviews and how doctors are just making money. This illness plays with my head sometimes. Trying to work out what the heck is happening too me,. Why this...Why that. Its never ending sometimes. After 10 years I go through stages. When the illness kicks in I begin to worry about it, then I start to go into denial, Then I realise, then I accept it. Then it goes away. Then it comes back. This illness is pretty chatotic and the only way I can appreciate life is by gaining meaning and purpose in something. I change my lifestyle out of work all the time. Sometimes I can fish. Sometimes I can't. Sometimes I can sit sometimes I cant. Sometimes I can walk sometimes I cant. Sometimes I can do things sometimes I cant. Some symptoms happen more often and some more severe. This illness is very much like nature. It courses throughout yourbody like a stream and blows thunder beneath your bones. Then they test me and they find nothing. So after 10 years it is not so stormy just a little cloudy at times. So you will most likely get better again just like myself. I have the rocurring one too but it never completley goes away. It goes mild to medium to severe. Overtime it gets less severe. I was practically crippled for 2 years at one stage. It depends which part of the body it attacks and how severe. I just don't know what other people deal with but my back muscles a very tight like rocks. I have muscle knots and stuff. My spine is tender. my legs burn and my knees hurt at the moment. Just not that bad., Then when I walk around it feels better. I think I have gotten use to it. It takes time to adjust but you can lead a relativley normal life. You will have to make modifications sometimes so that you can work. I bought a good erganomic chair. It will help in the long run
    • Posted

      The heart palpitation come and go. I did the ecocardiogram and it was normal. I have a stress test coming up in few weeks. 

      The cardiologist said there is nothing I can do other than run few test and see what happens. Doc said he can't fix an issue that is not showing on the test. 

      I'll take TNF in few weeks for sure this time around. Prednisone are oaky but I don't want to keep taking those. 

      Do you have any issues with peeing right now? Like stinigng feeling? PRostate issue?

       

    • Posted

      Thanks Jay for the nice words. I think I am still blaming myself and in a phase of denial now. I am trying to accept it and hope things will be better. I only feel depressed and tired. I ve never experienced mood swings only a bit depressed. I also think like you. Questioning what his time why tihs is happening? I am going nuts I guess smile. We must keep ourselves calm to fight with it. It is not only a physical thing but also related with our mood. 
    • Posted

      I think during this period I examined all the internet sites related to this terrible disease. I feel like I can write a thesis in this subject smile

      Yes Vincent I have still problem with peeing. Frequency and burning when I pee are the symptoms still I have. However when I compare them to the beginning they are rather mild now.

    • Posted

      I have deleted the article that was pasted in full here. Please do not paste articles from other sites as it can cause copyright issues. There are links to our articles on ReA at the bottom right of this page.

      Regards,

      Alan

    • Posted

      Hello Moderator, 

      but if we can't share information freely.. how are we suppose to help each other? To share information..? 

      Why there isn't  any different moderation rules for people who suffer and want to help each other?

    • Posted

      There is an FAQ section linked at the bottom of every page which includes the one below re links. If links are not suitable, ie commercial sites etc then you can use the private message service to exchange these. 

      https://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

      The issue above was copying/pasting of the whole article - if it was a link to the article it would have been approved. For info it was this article.

      http://www.uptodate.com/contents/reactive-arthritis

    • Posted

      So why couldn't  you say that the guy needs to paste the link and not the article in your first message?
    • Posted

      Jack - lol..That is so funny same here. Matter of fact I know more about Urethritis and Reactive arthritis than physicians themself. I actually challenge them and they give up. I need to tell my doc what meds I need and know he just writes the script as he knows I wouldn't ask if it wasn't need it. 

      Jack - Tell me about your urination issues. For example, me it does not hurt while urinating but it hurts afterwards - kind of like a burning stinging feeling (like the tip of the penis and whole urethra is on fire). 

      I want to know if this is infalmmatory or an actual infection. I doubt infection with all the antibiotics me and you have taken. 

      jack - Have you tried prednisone?

      Jack - Do you have any issues with flutter sensation that come and go in your chest? Any stifness in upper back ? Chest Pain? Rib Cage Pain?

      Do you have any burning rug type of arthritis joint pain in Elbow, Knee, Ankle?

      And just to understand correctly you have taken Doxy & Aizthro and tested negative for everything. Your urine analysis has been negative, no WBC found? And you have not taken TNF?

      I have an appt to take TNF in few weeks. I think I will give it a try as nothing else seems to work and I don't think I could take this disease longer. 

      Jack - You do know we are a rare case and in chronic stage correct? But lucky you that your ReA has not morph into AS (spine). My has and I get sever spine pain. It's sad.  Any fatigue?

      I don'tk now what your exposure was but my mearly a cheezy hand job at massage palor with lotion. Yes, laugh it out bro...That's not even consider sexual exposure but I don't know how I got infected...Dirty table, towel or what... 

      All my test have been negative in last two years. Nothing. Not a single one. Even the inflamattory markers are negative. Not a single piece. 

      My Main Symptoms:

      --------------------------

      Penis pain after peeing, lower SI joint Pain, spine Pain, eye pain, fatigue, headaches, elbow, knee and ankle pain, and Heart Palpitation with flutter feeling...These pain come and go through out the day but its been like this for last two years. 

      Flagyl was the drug that used to help me but no longer does. I'm not sure if you have taken this drug or not. 

      My only option is to keep taking Prednisone or go on TNF. I don't think I will keep taking Prednisone. 

      Also in my case, Instead of improving I'm actually going the opposite. I'm getting worse day by day with new symptoms. 

    • Posted

      Jay - Do you have spine pain?

      I don't know about your shoulder i really don't think its ReA. 

      You should try taking TNF see if that helps with inflamaation. 

    • Posted

      Have you consider or talk to your doc about ReA morphing into AS?

      I think your symptoms sound alot like AS then ReA now??

    • Posted

      I  almost pee every two hours sometimes it is less than that. I have a feeling of burn in my penis tip when I pee. Strangely diclofenac helps to these problems. I also use multivitamin pills.

      No chest , rib, SI pain . I have only pain and stifness in my feet because of heel spurs. My knees are also painfull an only in the right side . Nowadays I got hearth palpitations and feeling dizzy like vertigo. I dont have a severe pain I guess so doc did not offer tnf and prednisone. I have  a  mild pain. Tnf I keep it as a last resort . I was using sulfa however gave it up because of a flu. Thinking of starting again.

      I have high wbc sometimes and high crp. I even have hla b27 . Each of us having different symptoms like each of us are different.

      It is imflammatory I think. after a period of no symptoms it started again.

      I dont know mine is chronic or reoccurring type. I had a remission once.I am just confused.

      Hope you wil get better after taking tnf. Take care. Keep us posted 

    • Posted

      Can you tell me about your remission? Did you have no symptoms for period of time and felt normal?

      My never went away in 2 years matter of fact everday feels like day 1. It's so agreessive that My pain actually moved up to the spine and so joints.

      My doc says I have reactive arthritis and anklyo spondylitis. I don't understand how when I'm hla b27 negative.

      Hiv 1/2, chlamydia, gonnoreha, syphilis, hep b, c, crp, rpr, mycoplasma g, trich, cd4, nk cell, cd 26, cd 56, lyme, ebv, cmv hhv6, hhv8, hhv 9, rubella, igg , iga, igm, immunodeficiency panel, Ana panel, lupus, sed rate, wegenr granulemis, anaerobic, aerobic of prostate secretion, urine culture all negative and normal.

      Know you see why my doctors are confused?

      Everything is negative yet I have progressive arthritis and triad of reactive arthritis symptoms not going away.

      Also have done mri of brain, eye check , emg, ekg, ecg...all normal.

      I've taken doxy, flagyl, azithro, minocycline , cipro for 14 days each. No improvement.

      What am I missing? Why am I so chronic?

      The only doctor who thinKS this is possible is my rheumatologist.

      All my other physician are kind of confuse or diss me with all negative test.

      Now I'm not sure how many more antibiotics to take.

      My doc cane up with cleaver idea. Why not take tnf and see if an infection wakes up and let id doc take care of it.

      I have team of doc. I tell them to communicate with one another...Id doc and rehummy talk and they think tnf is best option and stopping all antibiotics.

      This will tell us what is going on.

      Could parasite do this? I just had hj with oIL at massage parlor.

      Now what?

      Jack my doc says sulfa and methotrexate no good for me because those drugs do not help axial pain only peripheral. Axil pain is spine rest is peripheral.

      What are u thoughts? Today would be 2 years since all this started and have not went into remission at all.

      Prednisone u help temp.

    • Posted

      Vincent I feel very sorry for you with my whole heart. I only understand from beginning till now that's a very complex disease we are through. It can happen with known triggers and also because of unknown triggers. Even docs don't know how to deal with it and the working mechanism behind . All they can do just treating the disease not curing it. There is no cure at all although we are living in the age of modern medicine .Even they nearly come up with acure for many mortal diseases like cancer. Sometimes I am going nuts why me. Thinking of like that give nothing to me no solution. We have to live bro no matter what one life one chance. What I am through ı venever experienced whole my life . never feel that bad and never worry for the future all my life. Do not lose hope bro .we have families beloved ones lovers and friends. We are friends too.

      In remission, I was totally pain free. No urination problems , no knee and feet pain. I was healthy like before.

      I ve got most of the tests that done to you . All negative. No triggering agent found.

      As I told before I am a ta in a university. I like to read and search . As I seen in many studies tnf blockers can bring prolonged remission to rea patients like 3 years time. However all medicine come up with promises (treatment and well being) and side effects too. Still need to be careful. People are different and their reactions to certain meds are different too.

      It is strange that you have a chronic disease. You also have negative hlab27.Your exposure is strange indeed. This is not a laughing matter. Mine was unprotected sex. Silly me.

      There is not a single road I understand. There are branches. some have mild others have severe. Some morph into as others not. Some only have pain while others have the triad . Some have severe progressive arthritis because of hla while others have severe arthritis without having it. I don't know what will happen in the future and am very worried.

      Just be patient bro. take tnf and let's wait for the results. When there is life there is hope wink

      Try not to worry too much. There are people on earth still can not find a slice of bread to satisfy hunger. Dying of hunger.

      When will you take tnf? What is the dosage? Only once or repeated or more infusions? I really wonder your reaction to it . Inform us .jack

    • Posted

      Jack, that is nice to hear you went into remission. I never did. I never in last two years had a day without pain. I see my doc once a month sometimes Twice a month and this can't figure out why I feel so bad. He even consulted with his friends Id doc and they weren't sure want to do as they never had chronic case.

      Why Me and why me chronic?

      The tnf drug is call humor 40mg injectable pen.

      I really don't have any option. Either I work on reducing inflammation or risk worth of organ damage.

      As for tnf I would think everything has rectum including the antibiotics.

      Flagyl was the only drug that helped "

      On top of that we made sure if anything else

      I'm really scared if this is parasite or some serious infection.

      She has pregnant and everytin coo...

      Jack, do you have any tingling in mid urethra or near top...?

      I don't want to take tnf but I have no options.

      I don't think there Is antibiotics that could help ...

      What to do m? How do u manage this disease?

      Lastly, do you feel this bug is in my prostate chasing issue?

    • Posted

      Once it is on the triggering bacteria is not so important I think. The disease will run its course. Most of the people got rid of it . We are not that lucky.

      Sometimes I have tingling feeling in my testicles.

      It can hide both in urethra or in the joints really I have no idea.

      Mine is rather mild so things are not bad for now.

      if I were you I couldn't manage it either.

      You made your choice and it is the right one in your situation.

      I advise you to give up smoking or alcohol.

      I am dying for a beer sad

      Exercise more but simple ones even if you are in pain.

      I hope someone will find a cure for all of us. There are many studies drug trials in this field.

    • Posted

      Are you sure the triggering event is not important? Would a triggering agent hang out and cause constant immune mediated response? What else would cause our body to have this chronic impact?

      Do you have any toothaches gum pain? All my tother hurts and I think it's inflammationmore

      Jack, from your research do you know why my case is so freaking chronic?

      You all lucky....I feel like I'll be dead in a year from this.

      My rib cage, spine. Kidney, heart, tooth, urethra , chest , all hurt. This is a real systemic disease.

    • Posted

      Why did Flagyl work and now it doesnt?

      If it was immune superser than why would it lose its impact now?

    • Posted

      http://www.ncbi.nlm.nih.gov/pubmed/20216128

      This is the article. I really have no idea about your situation. I only have sympathy for you and sorry for your pain. Hope you find relief after tnf.

      Even docs not know the cause and I am not a doc bro. Each of us special so our case also different and special.

      I also advise to use antidepressants for pain, fatigue and depressed. Ask for it to your doc.

      I wish someone would explain our case explicitly not in probabilities and answer our questions. Cure our diseases.

      Don't hang out here too much too wink .try to Breath and find something to relax.

      Do you have a job? Do you smoke or drink?

      I even try to work in this condition.

    • Posted

      No smoke or drink. I got unlucky. I don't have chlamydia never did was tested million time. Even negative to igg of three different Strain.

      I work. I try not to think but the pain is too much.

      I don't know. I hope humIra works, If this doesn't work then I'm screw.

      I done so much research I know a lot bUT I'm not sure how and why no one can tell me if I still have an active infection.

      Could I still have an actI've infection?

    • Posted

      Don't know exactly . Our immune system go mad I think. We may have the first triggering agent dormant also. May be in our joints or blood or urethra. Feel bad when I think of it. Feeling low day by day.

      Take care.

    • Posted

      Dormant? Could this hide in prostate?

      Then we could pass this on to spouse and gf?

      Wait u had intercourse, I didn't?

      Yeah lucky you....do you have toothaches?

    • Posted

      May be I don't know . Prostate is a small organ that abx can not reach easily.

      Or may be there are biofilm in there.

      Not exactly reactive-arthritis is not contagious. Only able to pass the agent if it is still there.

      Were you being tested for candida?

      Nope no toothache.

      Feel terribly tired now.

    • Posted

      Do you have prostate issues?

      How do u check for biofilm?

      million dollar quetsion  is how do we know if the agent is still there? Do you not worry about that with chronic ReA?

       

    • Posted

      Yes I have . Urethritis or prostatitis I am not sure.

      Of course I am worried why wouldn't I .

      Once we got this there is no proper solution. What we must do is living with it. Trying to cope with it . Let's live and see the outcomes.

      Don't know the answers but have too many questions.

      Do you have thickening in your palms and soles? Also small bumps? I noticed bumps and thickening.

    • Posted

      Do you sore or sharp pain kind a like tight muscle in your prostate? You would feel soreness inside your and kind a like on left cheek closer to anus?

      No tickles in Palm but I do have burning sensation on sole..I would feel like there is rash coming but there aren't any...

      Are you on any antibiotics currently?

      I'm taking minocycline not working. I've had total of 16 days 32 pills and still have symptoms.

      I heard only 6 pills can kill ngu 98%, superior then doxy....

      I might stop as arthritis pain continues..

      Worst pain I have is stinging after urination, chest pain, spine pain and stiffness along with really bad pain in my tooth and gum...all my teeth hurt. Kind a like someone is pushing down on them hard.

      Do you feel like something is about to come out of your pens like a left over urine or discharge but there's nothing when u squeeze the tip?

    • Posted

      good evening Jack in my case l did discover that Rieters is very

      contagious when it is in its activite state this l discovered years ago with a girl friend who develope arthritis in here knee and also developed it

      in her wrist she went to her doctor and of course the doctor couldn't understand what was going on after shared with her of my stituation it all fit together and l was very sorry on my part met her a few years ago in the shopping mall and thank goodness after first incounter with this arthritis it didn't return. when it is active there is a clear fluid from the penis may not be the case for everyone but one take care and as l

      shared in the past in our communication you must keep an eyee on your prostate blood count as l fell l had to have my prostate removed because of having Reactive arthritis.all the best with ealing with tough medical problem R from canada

    • Posted

      No I am not using ab☓ now. Only diclofenac 2 times and multivitamin.

      Only frequent urination and burning tip when I pee bothers me. No such symptoms you ask for.

    • Posted

      Thanks for the experience Roy. I don't know I will keep it mind.

      Which drugs did you used and benefited from? Or still using?

    • Posted

      Lucky you. Why do I have the end of the stick? Not comparing it to you, but I haven't found anyone else who is going through what I am. 

      I get chest pain on diclofenac . I take Duexis as need it, but doesn't help. Do you get heel burning sensation type?

    • Posted

      Yes I have occasionally. Now I have burning sensation in penis and testicles not when I pee in normal time too. This is the gift of today for tomorrow I do not know.

    • Posted

      I said to my rheumy about 6 years ago before I was diognosed with ReA thAT I fit the description of AS. He just smiled and told me I was in a difficult position until they find damage. It feels like I have AS and ReA. I just dont know cause I have nothing to find in my spine yet
    • Posted

      tHats so bad, I have the clear fluid sometimes and doctors told me its not contagious. my girl has complaints about knee pain and back pain. she is getting tests now. Thanks so much for the advice. Please do let us know how your doing at the moment? do you still have symptoms like spine pain everyday or flu like symptoms? does it ever completley go away for you?
    • Posted

      Honestly, your doctor is an dum for saying such a thing about AS. AS can represent it self with damage before the damage is shown on MRI.

      At least try to get prednisone so you can get out of the flare ups. Do you have uvitis or eye issue?

    • Posted

      No eye problems at moment. I use to get itchy eyes when i had std symptoms a year ago. i seeing flashing lights. Like fire flies sometimes. But I do headaches behind my eye ball.

      They found sacroillitis but seemed to improve he reconed. Its because my lower back improved after the first 2 years I guess. I have alot of issues in my upper spine at the moment. It comes more at night or if I flare. I just always have pain in my neck and makes noises when I rub it. It doesnt crack but makes like crackling. Im getting random pain over my body. Like knee pain or wrist pain. It doesnt bother me all the time just when it gets bad or at night sometimes. After 10 years I guess you start to adapt and it becomes more normal everyday I guess or possibly it just goes into a mediocre state, It makes me feel sick sometimes like I have the flu. I dont really get chronic fatigue anymore which is a bonus. Its like this thing changes all the time like the weather. Its a bich

       

    • Posted

      Hey sorry to hear ur issues...

      What triggered ReA second time to you?

      How are the inflammation markers ? Esr n crp now?

      Are they high?

      What does ur current blood work say?

    • Posted

      Current blood work all came normal esr and crp included.

      I do not think a trigger for the second time.

      It is just a flame with frequency and burning in urination and pain in the back and hip issues.

    • Posted

      I've noticed that certain types of body wash gels and lotions, when brought into contact with my urethra, can trigger a minor flare-up.

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