Reactive arthritis - just now developed

Bones, joints and muscles
1

Hello,

 

I have been reading the stories of reactive arthritis and i thought that i would share mine. It all started 3 1/2 years ago with urethritis and all the classic symptoms that go with an STD after a one night stand. I went in to urgent care 3 different times over many months and was treated with azithromycin (1g oral) and ceftazidime (injections). Each time the tests for GC would be negative and the same symptoms would return within about 2 weeks. 

I lived with this for many months until i went to my primary physician. He said that because the tests for STDs were negative that I needed to go to a urologist. So i made an appointment for the urologist. I go to the urologist and tell her my story. She orders many lab tests over many different visits, UA/UC, GC, CBC, ESR, CRP, mycoplasma, lymes, etc. to all of which came back negative.  

I was put on Bacterim for a month, that didnt provide any results. I was put on Doxycycline for a month, that did nothing. She insisted that i see a different urologist.

I go to the other urologist and was told that there is nothing wrong with me and that the symptoms are all in my head. He said that if there is something there, there is not a test for it and we cannot treat for it and that throwing different antibiotics at it was not the way to treat me. I was very upset about this becasue i have been getting the 'its all  in your head' line from 2 other doctors. But they dont know how it feels.

So now it has been over three years of living with the constant urethrits symptoms (urgency, drainage, constant wet feeling, prickly, uncomfortable) which has made my life aweful. I figure that i will have to live like this for the rest of my life, increasing depression and diminishing thoughts of having a normal social and personal relationships.

About three months ago, i started to develop early morning back pain. I was waking up 2-3 in the am and unable to lay down any longer. I would  get up and sleep sitting up on the couch or chair. I got to the point of going to see a chiropracter to se what was going on. It felt like there was a tendon that crossed my spine and needed to be put back where it needed to be. My back has been very tight and tender for a long time.

Chiropracter saw me for 3 sessions and told me that there was no misallignment of my back and that he didnt feel further care would be benificial and that he couldnt help me. He told me to go to the doctor.

So i make an appointment to go see the doctor this was a month ago. The day before I go into the doctor, my knee was aching. The next day it is swollen up a balloon. I have never had anything like this before.

I went to my doctors appointment, just a random doctor, and she takes xrays of my knee and back. She says that these came back normal and that i should see my normal doc for a follow up. In the mean time to ice and elevate my knee. So a week later, i go to my doctor. He orders a bunch of rehmatology tests, crp, esr, lymes, rf, ccp, ana, and also another GC test. Also, a MRI was scheduled for my knee. I am already a known HLA B27 positive.

MRI of knee was negative. all the other tests were negative (crp and esr were slightly elevated). But i was positive for chylamidia. At this point I was excited to finally have a positive for something!!!

Doc puts me on 1g azithromycin and 7 days doxycycline. He says that I have reiters syndrome or reactive arthritis. its been 2 weeks now, and im not sure the antibiotics have worked at all. I still feel like i can feel the urethritis lingering around.

Back to my knee. My left knee has been swollen since that day 1 month now. I had the fluid drained off of it and steroid injected, and it swelled back up the next day. Since then my 3rd toe on the left foot has been swollen up and is very sensitive. Makes it almost unbearable to walk.

I try to keep stretching by legs as much as posible as they have become increasingly stiff, mostly the tendons behind my knee. I have my good days and bad days for sure. This is a very dehabiliitating disease as i am a very active person and i like to keep busy. I have never sat around on the couch as much as i have this past month.

I am trying to stay positive, but it is difficult. I have missed out on many activities that i enjoy doing already, and fear I will miss more throughout the winter. Its hard enough to even go to work.

And now, my other knee is starting to ache.

But that is my story.

It has been one month since my

2

Have the doctors tested for fungus, trich, and gardnerella vaginalis? The medicines that would be used to treat those are different from what you have been taking.

I am surprised that the doctors are only using short treatments for you. If what you have is chlamydia, you should have been put on at least a month long course of antibiotics (azithromycin potentially in combination with something else). There was a fairly recent study that showed good results from a six month course of azithromycin combined with rifampin, specifically to treat reactive arthritis caused by chlamydia.

I hope that you get relief from this disease soon. I understand how difficult it can be.

3

For the most part I have been tested for everything that I have asked for, I feel like I'm putting more thought into this than any doctor has. I feel like they treat me like a science experiment.

I agree with the longer course of azithromycin. I begged my doctor two times to put me on a long course of it for at least 2 weeks and was shot down both times. All that ever happens is I get passed off to other "specialists" that don't know anything, nor have the care or want to help.

This has been absolutely draining on my physical and emotional state. At least I know that others have the same horrible life that I have. I wouldn't wish it on anyone and hope everyone makes it through this but hearing the stories of others reiterates that it is not in my head and what I do have is real.

4

I don't know what your medical system is like, but do you have the possibility of going to a different doctor, especially a different urologist? I can't believe that a urologist wouldn't see the need for a longer course of antibiotics after a confirmed chlamydia test result and symptoms of a persistent infection.

Another alternative is to take a trip to a country where you don't need a prescription and buy the medicines that you need. Obviously you need to do a lot of research before you do this, but it isn't hard to get good information on the Internet, especially if you follow medical papers that you medical trials (that include dosage information). I would look for the study that shows the effectiveness of six months of azithromycin and rifampin.

5

Yes Yankee is right. You should try combination antibiotics treatment of Dr carter's. Do more search in the medical sites please.

At least you know the triggering agent. There are friends like me who do not know the cause after many tests. We are unlucky .

6

Unfortunately I am in the USA and the docs here are, and have been extremely useless, not to mention getting quite expensive. Either way, I plan on gathering as much information as possible to dispute my case. If no progress is made on this next visit i will be looking for a second opinion.

7

Thank you for your input. It is tough to tell your doctor something to only be denied for no good medical reason. Its like they want to do everything possible not to help.

Well it has been 3 years for me, Im not sure if it is the chylamidia that is now triggering the arthritis. I have been convinced for years that it is mycoplasma triggering the urethritis, but unable to get the proper treatment for the cure. I had a mycoplasma test (a culture), which is like a shot in the dark to grow, come back negative. What upsets me is that they believe these lab tests to be concrete evidence that there is nothing there. I have worked in a clinical lab for 10 years, i know what the results mean. They are not definate answers.

 

8

I have just read the study you referenced about azithro and rifampin. It seems to have had good results.

9

Thoughts.. have you seen a rheumatologist? HLA B27 is a predisposing factor in 2/3 of reactive arthritis cases...have you considered NSAID use? Steroid burst?

10

Yes they are not definite answers. tests can be false positive with a low probability. Time of tests also is an issue.

I have been trying to solve this issue for 2 years but could not find anything works for me. I ve tried every drug except from tnfs. I ve been to many doctors urologist, rheumatologists and even psychiatrists. Also treatments comes with side effect that can harm your body .

I have mild pain in kness not bothering my daily life, never had swelling. However I have urethritis or prostatitis symptoms that ruin my life. Never had a  full quality  sleep for 2 years. I had a symptomless 4 months time which I thought as a remission.

all I can say you try to stay poistive, keep out from stress, exercise regularly and find a doc who beleives you. Always search there are some supplements like turmeric that can help you.

I hope you find a treatment that gives you a relief.

11

I have been thinking of you and of all of this discussion

Perhaps a fresh start...Every state has a university of_______ with a medical school with an associated hospital-clinic association.

Find the one with the best ranking that you can travel to...go urologist route

Think University of Chicago, Northwestern, University of Illinois, UCLA, NYU...

These schools receive federal dollars and therefore must provide services to Medicare and Medicaid patients...which means a great number of people from different walks of life which gives them wide exposure to diseases not typically considered. University people love to solve a challenge.

12

Well, you story sounds familiar... I was diagnosed with reactive arthritis 10 years ago. Everything started with a salmonella infection, which I never related to be the trigger of the arthritis. It took the doctors a year and a half to figure it out. Tons of tests and no positive answers, I know what you are going through, I really do. Until finally I got to see a doctor with a bit of common sense and he sent me to a rheumatologist. I went from a normal state to a wheel chair in six months, few weeks after having the salmonella infection. The inflamation started in my toes and went up to my ankle, both knees, hips, lower back, cervicals. The rheumatologist, thank God, figured it out, diagnosed me with reactive arthritis and prescribed a treatment based on methotrexate, cortisone and sulfasalazine. Three weeks after I was walking again. It has been difficult during all these years, because the arthritis comes and goes, but I git to maintained stable. Everyone is different, but you should look into a similar treatment if the couse is a reactive arthritis. I have a friend who did not do well with the methotrexate, but instead reacted well to Humira. He is doing fine as well. I hope this help to look into a different treatment and give more hope.

13

I wonder . Have you ever had urethritis psilva?

Yes all of us are different. So treatments may be different. A drug work for one may not work for other. For Urinary and gastrointestinal rooted diseases treatments may also differ.

Tnfs are considered as a last resort by many rheuM but they have bad side effects. So the pros and cons must be weighted.

I want to try combination abx therapy but it is hard to find a doc that believes in this.

Hope all of us find a treatment that work for us like you.

14

Update!

I appologise for not updating you from the get go, but it has been quite the 5 months. I saw a rheumotologist, in November. I had my knee drained 2x with about 25ml fluid that came off each time. All tests were relatively normal. He diagnosed the Reactive Arthritis. I was put on indomethacin. That worked wonders. I was able to finally walk again with much less pain. I would notice when i didnt take it, the pain would come right back. In January I was put on sulfasalazine. Theywere working well for me. As of march he wants me to start coming off the indomethacin and stay primarily on the sulfasalazine. I have been pretty bad at taking my medication lately, my knee and toe are a sensitive, usually in the mornings and at rest for extended periods of time. I really should get back on the wagon.

Either way, i am getting better, and my attitude on life is too. I hope that one day i this is all in the past and i dont have more flare ups.

It has been an extremely depressing few months.

I was even able to go snowboarding this year a few times, i was extremely happy about that.

Only other new thing, is that my left thumb joint is acting up and in some pain. I hope when i get back to my meds it will be better.

 

15

Happy to hear you are doing ok.

How is your urethrtis?

I was given sulfasalazine but could not use it because of side effects.

Advise you to take your medicine regularly if it is working for you.

So happy that one of us finds a treatment that works .

Also search for supplements and herbals that can also help you like turmeric and krill oil .

Chlamydia is a problematic bacteria. At leeast you know the reason but some of us dont.

You can also try combination treatment .  Consider it an another option too.

Take care.

 

16

Hello,

I understand how frustrated it is being ill and getting no help. Am not a doctor but having gone through reactive arthritis myself,though shortly,I know it can be hurting.

Now,it is very hard to treat Reactive Arthritis- in fact any sort of Arthritis because health provider treat the signs nit the disease. That's why you find all sorts of tests being done to rule out/eliminate others. Lets break down my advice to points;

1. Arthritis means- inflammation of the joint. We have many types arthritis.

2. Reactive arthritis occurs when bacteria travels through your bloodstream.

3. Having turned positive for STI you should have been given medicine for that.

4. The joint fluid should have been drained and tested for gonoccol and TB.

5. NSAIDs drugs are very essential for treatment.

Hope I have helped.

Kenyan Guy.

17

I saw a patent for combination drugs ( an antiprotozoal, antibiotic, and antiviral) that works within days, by rheumatologist wouldn't prescribe this to me as it's not standard care in Canada although she was willing to give me 6 months of rifampin and doxycycline which I feel is too long to be on antibiotics. I tried ordering the medications online but they weren't cleared through customs twice. I'm thinking I may need to go to another country to get the care I need. It's been 5 months I'm a 30 year old female, the worst of it is in my right ring finger which is swollen and locked in a bent position, looks like a troll hand. It also afffects my right foot and ankle, I have two swollen middle toes, both wrists, several finger joints. Hopefully we can figure out how to get these medications approved somehow or find out where we need to go to get them. Good luck!

18

Sounds similar to me, diagnosed after 2 years, now i got flares but tests doesnt show inflamation

19

Hi i hope you see this... how has your recovery been? i just wonder after all the original STD tests that were negative and all the preventative antibiotics you took to cure any possible STD. Just wondering how you tested possitive for chlamydia 3 years later? Urine sample? So after negative tests and numerous antibiotics were you still contagious?

20

Hello, can anyone please tell me how to contact the moderator of this forum? I suffered (and no longer suffer) from excruciating reactive arthritis due to following the advice in a book I read by a woman that suffered with it to the point where she was in a wheelchair...and then she was able to find a drug free way to find a way out of it and now bikes and does karate with no pain. I followed her advice and now I am pain free too. I posted about it but my post was deleted. I'd like to share what worked for me but I'm not sure how to do this without being deleted. I can't see a link to communicate with the moderator. I just read the terms and conditions of this site and I'm guessing my post was removed because it was considered advertising. But when people mention brand medication names isn't that advertising for pharma too?  There is no benefit to me whatsoever of posting the name of the author and book - I really really just want to share what helped me. 

Moderator or ideas? 

Thank you,

Linda