Sexually Aquired Reactive Arthritis

Bones, joints and muscles
1

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?

2

Sounds to me you might have a form of Reiters Synrome, about to erupt in my case an auto immune disorder malifested in swollen right knee over 3/4 months, NSU, conguntivitus of the eyes, EXTREAMLY bad night bed sweats (immune system) then itchty scalp and brown legions around one ankle (the left). Now i suffer with pain in the right hand, left elbow, neck generally also stiffness in finger joints/tendons also my eye sight has deteriorated, my GP has said it is tennis elbow the NHS keep putting my appointment back further and further. WALOW

Regards

Mel no appolagies for the spelling my fingers hurt, cono me direct at

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3

Hi there, have been looking for the last 16 monhes to reply to someone suffering from the same syptoms as myself.All i can say is i feel and am still experiencing all of your emotions.It has been a journey and it is still not over but if u would like to talk more about it i would be willing to share and hopefully help u in this hard time . hopefully u will reply to this and i can share some thoughts with u.This is a really rare illness that no-one really seems to understand and its a lonely path but by talking it will help.Speak soon

4

i caught Cham and and then a couple off weeks later got dry flaky skin on my shins and calfs and a pain in my toes aswell as that i got red patches on my penis i went for a std test and found out about the cham then to see a doctor about my foot and skin after about 4 months the pain went from my foot and the skin on my legs is getting better but still have the red patchs on my penis i was told by the doctor that i had reactive arthritis from the cham and that the symptoms would go over time duing the last 6 months i have had some nasty illness and im back with the docotors trying to get rid off the red patches which i have been told is balanitis which has come from the reactive i feel for u mate cause its been hard core go get tested again cause cham wont show up for a couple off weeks tilla couple off months after u have caught it

5

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?

6

Can anyone share an update on how their Reactive Arthritis is doing?

I developed Reactive Arthritis over a year ago and am still unable to walk.

THANK YOU to anyone willing to share!!!

7

Hi, I have experienced the full blunt of this disease first hand about 7 years ago. It took doctors here in the states almost a full year and many visits to the ER due to the relentless pain it caused me. To this date we were not able to identify the source of the infection that kicked my immune system in overdrive. I was however lucky enough to see a specialist at the University of Oregon and it didn't take him long to identify my condition. I was put on Humira, a immune suppressor or sorts generally used on patients with Rheumatoid arthritis. Not two months later I was running and active just as before the flare up. There were also no noticeable or permanent damage to joints or any other organs. After almost eight years however, I am once again beginning to feel similar symptoms although not as aggressive as the first time. I noticed that Aleeve, a commercial version of Naproxen works prety well for the inflamation and pain. Good Luck to all of you and I hope this post helps guide you the right direction.

8

hi, any news on your condition? I have exactly the same sympthoms.

9

Hi, Did you have to take Humira every two weeks? I am going through the same thing. ReA not going away two years later still suffering. Doc is trying to get me on to Humira. 

I was wondering does it go away until you take the shots or does it come back?

10

Ive had this reactive arthritis for 5 years or longer . recently came back in force from a shoulder injury. I have always had it but it would get better with excercise. I even became a bit of a bodybuilder even with the pain. I got injured all the time but I did get lots of muscle. It seemed to help me but I would advice only bodyweights excercises cause I got injured too much. I had chlamydia a year before I got reactive arthritis really bad. I couldnt do anything anymore, it hit me real hard in the spine. I started to get stiff neck and couldnt sit down for 1 year. I got rashes etc. I have had different symptoms and about 1 year ago I thought I had aids or some bad std. To be honest this illness has caused more pain on my myself mentally thinking I am going to die or I have some STD. I had so many tests convinced I had an STD.  I even had discharge ichy genitals and even bleeding gums(I was tested and all came back negative WTF). The bleeding gums made me believe I had aids at one stage and it was a terrible feeling waiting for 3-6 months to know if I actually had aids because I had symtoms of STD. I realised after 1 year it was the reactive arthritis again(It tricks me all the time even though I know I have RA). I hope this helps you understand that if you have the same thing as me, you can get a lot of different unexplained symptoms its absolutly amazing. To be honest you have to look at what you learn from your RA. I hate it but it has made me a different person and more in tune with nature.  I am at breaking point after my dislocated shoulder because even my physio said they dont know if she can help. So please try not to stress your mind like I do worrying about symptoms, it will send you insane. I know first hand and I was worrying all last week. The year before was something different and the year before that was something else. I had a relativly normal life with ups and downs and unexpected turns. You need to keep moving, if you stop moving, it seems to attack more. . Please walk, try to do skipping or swimming or anything that is excercise that does not cause more pain. At first I skipped and it hurt. Over time I got better but I did use anti inflamatories to get the inflamation down at first. I am also in a flare up now where its so bad I cannot heal from a real injury. Its terrible and I pray that my shoulder gets better and need to go see my rhuemy again cos it has gotten unbearable. You do sound like you have reactive arthritis and I hope my experience doesnt sound so gloomy but I wish I was better prepared on what I needed to do earlier. most people get better within 1 year. My symptoms dont seem to be as intense as the first year. I still have problems because of my injuries. I wouldnt be suprised if my reactive arthritis crosses over with biomechanical issues. It seems to attack what is weak. Good luck and I know you will get better.

11

Have you taken any drugs? Antibiotics ? Did that make it go away? 

How about TNF blocker suck as Humira? Prednisone?

Please tell us so that we could use.

Did your spine pain go away? Is it consistant?  Has ReA morph into AS?

 

12

I havnt tried TNF but mabey I should have, now that its been over 6 years. I can;t even remeber when I got it but I was 27 now I am almost 34 but I had stiff neck symptoms for a couple of years prior to getting real sick when someone grabbed my spine at work. It sent a bolt of pain down my spine. I think thats why I got it cause I had chlamydia at that time. It caused an immune reaction or something. It was so powerfull I became crippled. I am way better than I use to be. I still have pain but no where near as bad. When I wasnt injured I lived a pretty normal life but I excercised all the time to get better. It was brutal in the first couple of years but seemed to lessen. Anti-inflamatories worked (celebrex). But I have been drug free for about 4 years. I think I need more drugs now that I injured my shoulder and the injury is not healing. You will get better with time and excercise. I still have spine pain but not as bad. I don't have any damage or signs of damage. Just pain and sometimes disability from straining my muscles. Its a difficult illness to understand and I still have trouble today. I have my ups and downs so try to be positive. I laugh about it sometimes now and me and my friends call it 'mangina' lol don't get upset about your illness try to embrace it I guess. I still get in a rutt but I always get out of it. Be positive and hang around people that support you. I found I have mostly new friends and a girlfriend now. My old friends gave me sh*t about my illness and couldnt handle the fact I couldn't party anymore. I realised who my friends are and which family I can trust. You learn alot when you get sick but you can always get better . Do meditation when you feel a lot of pain. It truly helped me. accupuncture as well. Try not to waste your money but just live healthy. I wasted 1000s of dollars trying to cure myself. There is no cure except for change ur lifestyle to a better one. If you already are eating healthy, excercising, hydro therapy, some massage may help. Trust me this reactive arthritis takes a while to go away and you need to embrace life while you can. So excercise I walk. Go to the beach or go see wild life. Get in touch with nature to build your spirit. drink water and improve your blood flow. I went to chinese medicine which helped a bit. Everyone is different but stress makes reactive arthritis worse. I waisted time dwelling on my illness and still do at times when it gets bad. Try to distract yourself with fun activities. obviously do not injure urself do intense activities. Start of light anbd build into it. Most important thing and I will reapeat myself keep moving. Do not stay still it makes it worse. Try to have a balance in life.

13

my last reply is being moderated lol. I used anti inflamatories. I was diognosed with spondylaropathy or watever but looks like reactive arthritis. I still have spine and back pain 6-7 years later but quite mild now. I thought I would never get better. Its not as bad now but I am suffering badly from shoulder injury/arthritis hence why I am posting. I have been trying to workout if my shoulder is not recovering because of RA or because I actually tore my muscle/ labrel tear. All I do know is all my muscles are so tight and I have lost range of motion in shoulder. I have not tried TNF. I am going back to my rheumatoligist now cos it is attacking my dislocation injury. I dont know if RA causes dislocation but it did seem to pop out quite easy when I injured myself and I had never dislocated before. My symptoms are very simalar to AS but I don't think it is because I do not show any signs of serious damage to my joints. I had balantis on genitals, skin rashes, muscle twitching, back pain, knee pain but never any signs of swelling. I had IBS but it can come and go within a day or a month or a year. This is why I am having so much trouble with my shoulder, I cannot workout if my pain and sudden change in condition is due to reactive arthritis(flare up possibly) Its kinda crazy and screams that its my own immune system. So immune suppresor sounds like it would help me. GO SEE A GOOD RHEUMY. YOU WILL GET BETTER. It was brutal in the first year and I am even scared to remember. It was very traumatic and I feel that anyone who gets this illness will become a stronger person when they get better. It just takes time and get intolerences/allergies tested. I cannot eat capsicum and other foods. I get flu like symptoms or malaise from certain foods. hope this helps. The first year my pain was consistent and I never got better. after a year I slowly got my life back, but like you can see if something triggers it again it probably won't be as bad as the first time. If that makes sence, it gets a lot better and most of the time it is completley dissapeared. If you have any question just ask, I still struggle with this illness now and then too. So I am glad to help anyone who has a question. Its only advice because I wish someone helped me.; I was undiognosed for 1 year before I got treatment. The undiognosed part sent mne mental because doctors didn't believe me. for some reason I never showed obvious signs

14

You pretty much wrote my story. ReA then AS possible symptoms. I am HLA b27 gene negative.

Go figure this thing would go away but Spine pain sucks. My entire upper back shoulder is stiff could hardley move without pain.

I am waiting for Humira. Have you taken any antibiotics?

DO you live in US?

15

Yeh I am HLA b27 negative also. Did a specific trauma or injury happen when you got a bacteria? I had some guy grab my neck to make it go stiff for months when I caught chlamydia. Then later a physio pushed on my spine and I drank alcohole. It progressed it further even though I got rid of the bacteria.. I believe this illness is progressive. It can also go backwards smile. Which is why you can get better thank god. It is pretty hardcore at first from what I remember(I felt like 160 years old). It felt like my body was on fire . I couldnt walk for more than 10 minutes without feeling pain in my groin. Then I had to drag my leg till I eventually had to sit down. I couldnt sit down for long. I could barley do anything that was repetative. It began to hurt staying still in any position. I never woke up refreshed. sacroillitis was by far my biggest complaint. Sacroillitis crippled me for the first year. The pain jumped from my upper neck where it started down into my lower back. It even switched between lower and higher back. It was playing tricks on my mind. It was like an explosion when it first happened in my lower back. I never had experience anything like it. I thought my back was broken or something. Everytime I moved I thought it was damaging me.  sacroillitis is how they diognosed spondylaropathy from mri of lower spine. So I think it was damaging me then because they found slight damage and inflamation. I had severe pain for over 1 year with no treatment. Thats why I was getting damaged. Once I took anti inflamatories I started to improve. Other than that I have no other evidence, even blood tests were all clear. Its strange that I still have no damage in my shoulders or neck.

  had chlamydia for about a month then got rid of it with azithromycin. There are theories  that the bacteria could still be inside us but I am sceptical without evidence. Anti biotics can make you worse if used for long periods my doctor told me. SO I only took the azithromycin once to get rid of chlam which was before I even had reactive arthritis symptoms. Anti inflamatories were what helped me. Naopraxen stopped most pain but gave me stomache ulcers and changed to celebrex. I was never cured but made a dramatic improvement combined with excercise. I started lifting heavy weights which I wouldnt reccomend. I just enjoyed it too much, I was supprised I could still get big with pain. I was occassionally straining muscles and neck which slowed my gains cause i had to rest till my stiff neck till i got better. Muscle strains and sprains finished my cricket career. It was hard for me to give up sport because I was so athletic. I couldnt do what I use to because I got injured. Ussually 1 month I had to wait for sprains to heal or sometimes a year. Thats what made reactive arthritis so ahrd to deal with. I neevr knew if they were real injuries or pain from reactive arthritis. I still don't. So I am not toatally sure what this reactive arthritis is, but I do know that the more active you become, the better you will feel, mentally and physicaly. Just don;t go to hard like I did and end up injuring all the time. You just use the drugs to help you get through the first phase of inflamation. Do not rely on the drugs alone it would probably take longer to get better. Eat enough food and get good protien so that you keep your muscle around your joints.

 

16

If you get better from humira let us know. Im thinking about trying it

17

jay,

Are you in UK or US?

My started after a hand job with oil. I know no one gets infected this way buut some how I did. 

Let me tell you something. My reactive arthritis is chroinc. Til this day I still have pain in urethra and prostate inflamed. 

Do you have urethritis symptoms still? I've taken so many meds Doxy, ZPack, cipro, Flagyl. 

Doctors don't thik I would have any bacteria still but why am I in pain?

They're saying Urethritis is part of Reactive Arthritis. I have so much pain on my upper back spine. I can feel my spine crack all the time. 

Aleve or Duexis (high dose advil) does not help. It does only for few hours then it comes back. I even taken Prednisone. This helps a little but it comes right back after prednisone is gone.

So the big question is could I still have a bacteria despite negative urine culture, prostate culture, negative for STD and everything????

What do you think?

They never found anything in my urine. No Trich, No mycoplasma, No chlaymdia no gonorreha. Nothing. Urine Analysis is spanking clean even thoght I'm p*ssing burning urine all day long. 

What should I do? 

I'm happy that your improving. you really should take Humira since you responded so well to Aleve. This will stop the disease on track. 

My only option is to take Humira at the moment and see if everything goes away. I doubt it.

My next trail of Medicine is Trimethoprime I'm hoping this is my golden med. 

Thanks. 

18

Check your private message. Just wrote to you.

19

Yeh I sound similar to you and I still have mild urethritis symptoms. I do hope you get better. It is a really difficult illness when it gets bad. I cant recover from shoulder injury. Most of my symtoms change and it is hard to keep up with. It can come and go within a matter of seconds. Or it can take years for certain symptoms to dissapear like muscle strains or STD symptoms. My IBS is gone but I noticed food intolerence. I get worsoning symtoms from injuries or exposure to the flu injection. Did you get a flu injection or anti viral injections before you got sick? I noticed when I got a few injections I got pain in my arm before I got really bad. I refuse to get flu injections now because I think they make me react. Did you ever get food poisoning? The only other clue I could think of is that a girl I was with had HPV. Meaning I must have HPV but they said they don't treat males for HPV. I am like why not? Girls are only treated.  having HPV must do something to males. The only other clue I can think of on the top of my head is that I possibly got yeast infection symptoms. Who knows what bacteria may have been around. It is either a bacteria or auto-immune. What else could it be?  I am just scared myself of trying these drugs when I did make some improvements and some symptoms re appear anyway. I never went into remission but some of the worse symptoms like sacroillitis went away but not completley to allow me to work. But I dont even notice it now because it was so bad before. if I push deep into muscles or get a massage I can feel how sore and tender I am still. Now with my shoulder being attacked really bad I may have to go down the path of medication. Il try antiinflamatory and steroid injection possibly. If they had less side effects I would try them but the anti inflamatorries were bad enough. They caused massive mood swings and anger. I think it was because I was taking them for 1 year. I went onto mild antiinflamatories but they didnt do anything. I stopped taking medications but to be honest I still have symptoms and issues. I seem to get better but some injuries take longer. I think this time I have actually lost mobility permanently from shoulder dislocation. I am so worried about that only being in my 30s. The muscle twitching in my shoulder non stop for 4 weeks. I think it must be damaging me, but my mris look normal besides labrel tear. It feels like its my illness stoping my recovery. It is trying to trick me again and I am going to avoid surgery hopefully. Imagine I got surgery for labrel tear and it was reactive arthritis causing my pain. So I have to be careful about the path I take for treatment. Its like I don't know whats a new symptom or a new injury

20

HI All, 

I diagnosed myself with ReA through researching the symptoms I had, cause unfortunately no doctors knew what was going on. 

Back in July 2015, I woke up with conjunctivitis (Antibiotic drops sorted this after a week), the night after I woke up at 3 AM with my right hands as swollen as ever and the pain was unbearable, i did not sleep for the next 3 nights from the pain. 

After a week my right knee swell, then one of my finger in my left hand then my right Ankle. this all in a time frame of 4 weeks. 

From being ok i went on being on a wheelchair on a Plane to Italy. (I live in Ireland but I am Italian). It was the worst thing ever. 

Anyways... Doctors don't really know very well this Disease. 

I have read a lot about it. 

Doctors that can help you are :

first Rheumatologist, Ophthalmologists , and Nutritionist i would say too.

The initial cure was Antibiotics, 

then Steroids tablets and after that Anti-inflammatories. 

I Have been on Anti-inflammatories on and off 6 months. 

Although i have improved a lot, i am still not quite 100%, 

My ankle would get pains, my back a bit as well, my knees and shoulder too. They are mild pains, but annoying. 

I really do not know if this will go or will stay. Apparently having HLA B27 positive is not for a good outcome in terms for the disease to get chronic.

In my case I am HLA B27 Negative, prognosis should be 12 months, but I have also read that if there has been a triads of Symptoms as in: Urethra, Eyes and joint, the outcome is not so good either.

My advice: See more Rheumatologists, research and post back on this so that we can all learn about this.

All my tests Bloods and Urine are negative. All is good. On Paper.

My next plan is to do a food intolerance blood test and see what I am intolerant to, this helps on reducing inflammation on the body.

I take supplements as: Omega 3/6/9 and aloe vera gel/ juice every day.

1 Difene daily (75mg)  -- I skip this when I can.