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?
2 likes, 166 replies
max04567 Guest
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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.
Anon max04567
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max04567 Anon
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Do you know that during the research i did, i read that Columbus Christopher died from Reactive arthritis caused by food poisoning.
Why haven't we found a proper cure for this in over 500 Years?? lol
I do get improving, but then there are weeks where it flares up a bit more.
Anyway will see how it goes.
Vincentworld max04567
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Prednisone? What antibiotics?
I try all the antibiotics, cipro z pack, flagyl, doxy...nothing helped except flagyl
I've taken prednisone and that made things worse.
My next step is to try getting my hands on tnf blockers.
Do any of you have spine pain or symptoms of ankylosing spondylitis?
ReA can manifest into AS?
max04567 Vincentworld
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I had Antibiotics at the beginning of the onset of this condition to get rid of the infection i had.
After that was Steroids for 3 weeks.
then anti inflammatory.
But the other day i read about this particular trial done in USA as a cure for Re-A
have a look.
https://www.sciencedaily.com/releases/2010/04/100429082355.htm
Vincentworld max04567
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In my case I don't have Chlamydia. Matter of fact all my urine culture have been negative. They're not sure what the issue in my is.
After steroids what happen? Did ReA come back?
Have you tried Tumeric with black pepper?
Vincentworld
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Doxy does not do the trick for me. However, Flagyl does. But does not put the bacteria in remission.
I am thinking about trying Triemthoprim and Doxy.
Anon max04567
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Anon Vincentworld
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max04567 Anon
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What hillness did the girl who went blind and def had?
Just Curious...
Vincentworld Anon
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Doc think its anti inflamattory of Flagyl helping, but heck it helps lot more than Advil or Aleve at high doseage.
There is no going back this is what doc is saying. What I really think is there is a hidden infection somewhere constantly provoking Immune response. I don't think medical is interested in figureing out those infection.
Vincentworld max04567
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I suggest everyone visit there doctors every 6 months. For instance...go see your eye doc ever 6 months, go see rehummy, go see ID doc...
Matter of fact there is nothing they can do for you besides give you pain killers. Most doc are not interested in Antibiotics treatment.
Anon max04567
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Anon Vincentworld
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Anon Vincentworld
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Vincentworld Anon
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Are you HLA- B27 neg?
I really think me and you are going through same process. Do you know how rare that is?
This illness is a very rare medical syndrome. That is why no one really seems to know much about.
How long have you been ill? Have they excluded wegner gran?
How do you pay your medical bills? What type of job do you have?
There is not much we can do once it is trigger. Most doctors do not care to check for any other infection once they have excluded most things.
Now what? I don't know
How is your urethritis, do you still have symptoms?
Like something is crawling?
Anon Vincentworld
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Yes I am HLA-B27 neg
Yes very rare I am probably should have bought a lotto ticket Its very rare and I don’t know anyone who has it. I only know people with rheumatoid Arthritis
I think its very hard to deal with because its even hard for the patient to understand what the hell is going on, so this must be why the medical system cannot really deal with people like us properly. My illness is invisible to others. The only things I have had visible are Balantis(red penis tip and sore) lasted a few months. Itchy red skin but moistly on my shins(comes only when I was chronic), muscle twitching. Otherwise most of the time its invisible besides Mri finding of sacroillitis. My pain is totally invisivble with so real sigbns of swellings. Its so strange.
I have been ill for 7-10 years first 3 were very mild I didn’t know but I knew something was different.
wegner gran? What is this ? I will have a look into it.
medical bills can be costly. I was broke as hell and I went untreated for a long time when I was unemployed for one year. My friends sometimes helped me or girlfriend. Australia has some health care assistance but not much for specialists. I get like 70$ back from $250 visits. I do desk job in designing. I wouldn’t be able to labour or do anything to physical for a job. I would be injured all the time with stiff neck or back. I could do physical job if I didn’;t flare up. So I do desk job because its easier to keep my job if I strain my muscles or injure myself.
Anon Vincentworld
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Vincentworld Anon
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We are suffering from chronic ReA.
How is your heart? Any issues with palpitation?
My ReA is so bad that i will flare every few weeks. Few days will be bad and really bad and then I feel fine for few days then back to square one.
I take Doxy & Flagyl everyday and nothing seems to really help. Now I will start taking Prendisone just for flare up for quick time for flares.
What do you take for flares?
How about your eyes? Heart? Any issues? Hip pain?
This disease has made me sad. Very sad. If you don't mind me asking, how old are you?
I'm 32.
Thanks
Vincentworld Anon
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Anon Vincentworld
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Heart palpitations. Yes. You just made me remember in my early stages first 3 years milder re occurring problems that didn’t last long. I was in London after I had Chlamydia say 1 year. I was working for a large company when suddenly I got hit hard with sudden pain in chest, dizzy like feelings. I was out of sorts for a few days. I went to the hospital but I had to walk like 2 hours because I was on my own (was difficult to walk and felt fatigue. I got to the hospital and they checked me and said I had heart palpitations. They sent me to the larger more equipped hospital and tested me. A erratic doctor explained to me your way to young to have heart problems and that I look so healthy. They found a black mark around my heart in an xray. She said its probably just something in your lung. I was like whatever and thought what a bad doctor she seemed lol. I know lots of people who have heart troubles in their 20s . Anyway she gave me tablets and I left. I never checked for my heart since. Maybe I should now that you reminded me of this.
My eyes seem fine but sometimes they have been itchy,. . I use to have a lot of hip pain but my lower back symptoms are much better now. I have had pain in all my body at some point or another. I have even had sparkling pain. Do you get sparkling sometimes? I noticed crawling last night. It was inside my genital and went away in like 10 seconds to never return. This is why I don’t notice alot of my symptoms. Some come and go as they please. The faster they go the better So do not think about it too much otherwise your mind may progress it if you think about it too much. When you forget about things is when they disappear anyway. Have you noticed that?
Do you always have constant pain also. The strains are more severe though because I lose mobility and extreme stiffness. I always have some stiffness and pain but not like the strains. Do you suddenly pull your neck and get stiff?
You sound similar in that it comes and goes when it wants. Mine seems to last a long time. usually at least a month usually 6 months to a year. I have had mild pain the whole time though no matter what. I have constant mild pain now with sudden stabbing pains sometimes. It is difficult for me and I need more help sometimes. I don't usually get it because I am not understood . Most people who treat me have progressed my illness. Like physio-therapists who pushed on my spine. Mine got really bad when I went to a physio so be careful of them pushing on your spine.
Anon Vincentworld
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Anon Vincentworld
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Anon Vincentworld
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max04567 Anon
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I actually did.
Anyways, i am staying off anti-inflammatory at the moment cause my pains aren't so bad, unless i starting doing some kind of physical effort, as in playing the drums or running for too long.
Funny how my rheumatologist thinks i am going towards full remission of this. I am not so sure.
Will see what happens in the next few days.
As Jay says looking at food test is a good one.
Getting sad at times it's normal. But we got to accept and keep fighting to get better and better.
Have you guys read the link on one of my previous posts about a possible cure using 2 specific Antibiotics?
Vincentworld max04567
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Vincentworld Anon
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I really think its bacterial infection causing cosntent immune reaction.
Did you have more urine test?
Do you take prednisone?
I don't know I just feel bad every few weeks I'll get intense flare up and then it will go away then it will come back.
The burning joints, pain in the eye, headaches, hip pain, heart, organ pain all this gets to you after a while.
You get sad because you see everyone else staying health and eating right and living there life.
max04567 Vincentworld
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Increased understanding of the biology and survival tactics of Chlamydia trachomatis is suggesting that the post-infectious chronic arthritis experienced by many patients may actually be curable.
Emis Moderator comment: I have removed the article that was pasted in full here as it may breach other website's copyright. Please do not paste whole articles in posts. You can exchang links if required via the Private Message service.
http://patient.uservoice.com/knowledgebase/articles/398331-private-messages
Anon Vincentworld
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I only take celbrex at the moment for about a week. I got cotisone injection in shoulder which has helped. I still think my shoulder is not healing because of illness. It seems to be reacting to my labrel tear. Im nervous about getting surgery with my illness. I dont know if its the labrel tear and if I need surgery . this illness can be tricky.
My mate got a bacteria too, he now has epelepsy to this day. It seems as though if they find a cure it may cure a lot of people.
It is sad and I cannot deny that, but believe me you will start to improve eventually or learn to get by. It took me over 3 years just to get back to work. I still stuggle now but not like I use to. It is getting pretty close though cause of my shoulder. ReA seems to really attack me cause of my shoulder dislocation. Its really painfull and I cant really use it much. I have lost so much muscle and is disapointing. To be honest I will one day recover hopefully from my shoulder. It definatley sucks to not be 100 percent healthy but I definatley dont think about what other people can do, it just upsets me. Try not to think like that because it will make you worse. some people at work, even though they are my friends laugh about my illness. They really think I over react. I ussually dont handle it too well deep down. It hurts because I know how much sufferring I have been through. I guess only if they knew they might not laugh about it. I can't get mad at people anymore, its just because most adults are big childeren. Or their the tough guy. To be honest it makes me laugh at how everyone thinks their injury is worse. I just agree with them, that they are way worse off people would never understand anyway. I try not tot tell people about my illness now, but its hard sometimes when you cant make it to work.
Vincentworld max04567
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No STD detected. What i have is non std bacteria.
Anon Vincentworld
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I have had cortisone shot but I do not take predisone. I am going to the second opinion tommorrow. seeing a rhuemy to see if they believe it might be fibromyalgia stopping my shoulder from healing and causing the pain or complications. I need to be sure about surgery. This SLAP tear feels similar to my ReA symptoms. I am worried its both because I have pain when not even using my arm.
Vincentworld Anon
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Rea does cause shoulder issues....and pai...it's more of muscle pain...it's not fibro...
One way to test if it is fibro or Rea is to take oral steroids..
If pain goes away then it's inflammatory...if muscle pain persist then it's muscle pain..
Vincentworld Anon
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1g of a Zithromax and 500mg twice a day for 7 days flagyl.
I really think since you are chlamydia induce arthritis there may be hidden bug that attach to cell.
I really think Rea goes away once the triggering event is remove.
Vincentworld
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This way you are 100 % sure that your chlamydia and associate pathogens are clear....if u feel better in few weeks then u know you had other pathogen.
Anon Vincentworld
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Anon Vincentworld
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I will try for 7 days to see.
Do you think it was possible to have the Chlamydia pushed into my system and not be detected? It actually felt like a lightning bolt down my
Anon Vincentworld
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Anon Vincentworld
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Vincentworld Anon
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I know its CBP. I just don't know which bacteria. There has to be a bacterial trigger that is still in my prostate. Until I get rid of that I doubt my Arthritis will be cure.
What did your doc say in your last appt? How did that go? Do you have any Hip Pain /Stiffness?
How do you get rid of hip issues, I have bad stiffness for last week.
Anon Vincentworld
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Anon Vincentworld
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Anon Vincentworld
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Anon Vincentworld
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Vincentworld Anon
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Does that make sense? How do we treat / cure the uderlying issues in which arthritis could be cured.
F doctors all they do is make money. Most of them just don't care.
Vincentworld
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Anon Vincentworld
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Vincentworld Anon
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I kinda a hesistated and pushed it back few weeks and want to try little bit more of antibiotics see if it works.
I don't know but next month for sure I'll take the dam shot if nothing else seems to work.
Vincentworld
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samjo111 max04567
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Anon Vincentworld
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Vincentworld Anon
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After must anticipated research in immune system and reactive arthritis - I have learn that you may still be harboring the triggering infection which is causing flare up.
Reactive arthritis is the only arthritis that is acceptable by rheumatic board that its initial inception is bacteria.
It's not any bacteria is it obligate interceullar organisim.
90% of the cause is chlamydia or mycoplasma. That leaves the rest of us 10% of us who remain symptomatic post 2 years.
You may be infected with multiple antibiotic resistent bug that hides in your urethra causing immune mediate reaction.
This reactive arthritis is Not and I repeat not an infection of joint.
The pain you feel is tnf protein your immune system creates to attack foreign substance.
You need to find a doctor who can culture the dam thing..
Do not take any antibiotics until u know the bug. These bacteria will multiple quick and become resistence.
Please don't settle until you take proper abx.
Jay, u need to stop taking shots. Reason u feel better is there giving u prednisone shots.
It's a temp fix.
Why don't u get humira?
Thanks
Vincentworld
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Anon Vincentworld
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Il talk to my doctor about looking for bacteria. How do I find this bacteria besides urine tests is the question. I guess they would need to know what to test for because they only test for stds I think.
Whats proper abx? what kind of doctor can help me find bacteria because most don't want to test for bacteria
adam59082 Anon
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