Reactive arthritis: share your symptoms, how long you have had it, treatments you took and results

there are many bacteria that can cause this and combination antibiotics could help you. please do more research!

Hi...I first started with RA 19 years ago when my son was 2 months old, came on overnight after the Flu and effected mainly my knees and elbows....it was excruciating, I got stuck in the bath once as I couldn't pull myself out!!..it was short lived, thank god.....last November I was in bed, with the flu, during that time I started with acute shoulder pains,both shoulders, symmetrical throbbing, burning, stabbing and my upper arms feel like they've been used as punch bags, can't sleep...extreme tiredness, loss of appetite, weakness down the arms. In January this year I developed a kidney infection and a lump in my armpit....I've just been to see a Dr at the hospital today and he says it sounds like the RA is back due to the Flu caught last November, as X-rays taken today are clear and no visible problems with my joints ....4 months this has been going on, and in all honesty is the worst pain I've ever experienced!! He's referring me to a rheumatologist...that's my story in a nutshell xx

Hello Ambitious,

Answer to #1 is I was diagnosed with C Diff took several rounds of Flagyl.I actually didn't get diagnosed until a month

after symptoms started due to first stool specimen came back incomplete from lab and second negative.It took a colonoscopy to diagnose pseudomembranous colitis.The spores have toxins in which damage the colon.Thr day after colonoscopy it started with which I thought was pink eye that I probably contracted from the surgery center.Also left knee was painful,then started swelling and more as the days went by. Could not bend it to go down the stairs or anything ,very painful.Next week went to right eye.

#2 Had synovial fluid drawn and showed nucleated cells were high and off the chart.Was sent to infectious disease Dr.by an orthopedic surgeon thinking it was sepsis,it was not.Then right ankle became swollen to the size of an elephant,never experienced so much pain in my whole life .By the time I was diagnosed from an Rheumatologist it had been a month and 2 weeks.She aspirated the ankle and it was nothing but blood bleeding into the joint.

#3 She did not order an MRI but did 36 X-rays from shoulder to feet.She did say it would take some time to tell on an X-ray if there was any bone erosion.The X-ray showed of course inflammation of the soft tissue,some loss of bone in my knee,left and right lung apical plural thickening which is scar tissue from inflammation.Had an chest X-ray a few a couple of months before I got sick and was not present then.

#4 Unfortunately this started a year ago January,and I'm one of the small percentage that still suffers with symptoms.I too am on Methatrexate and just got the dosage increased for the third time 20 mg.weekly.That's the highest orally my Dr.said,next step injections.It is now affecting the opposite ankle and Achilles' tendon with excessive swelling.Around spinal cord too the pain is getting worse there.

#5 I do take multivitamins and vitamin D ,which is

recommended since excessive steroid use has caused osteopenia,pre cursor to osteoporosis.Have not tried any other natural remedies as far as herbs or anything.Diet,I need to work on,I have gained 15 lbs. from the steroids and months of being bedridden and have yet to loose it.??I had to buy a new wardrobe.I will say the pain is nothing like it started out and is better.I do need to start back exercising and push myself to do it.

I apologize for the lengthy response.I hope you can find some relief and get some solutions.😊

Angela

Hi,

My husband has had ReA aka Reiter's Syndrome for 27 years, since he was 29.

It was brought on by dysentery caused by a dental visit. 

His symptoms were typical right eye was red and had pressure, 2 swollen knees (like balloons). 

At the time he was diagnosed the Dr sent him home with Naproxin.  

The Dentist treated him with numerous antibiotics. 

At that time in the 90's there was less known about the disease and no internet to research for any hope of relief.

My husband who was an extremely fit and active athlete had lost about 30 pounds and could barely walk. He was completely crippled by the disease & would have to shuffle to walk. When he got home from work in the evening his only relief was a very hot bath.

His first Flare up lasted about 6 months. Miraculously it disappeared in one day, after he ate a bag of dried apricots treated with sulfur dioxide( he attributes it to curing him).

He didn't have another flare up for 20 years until his parents were both in ill heath. He had quit a bit of mental  stress at the time, we think the stress and acid reducers such as Prilosec might have brought his ReA back.

This time he endured the pain as long as he could until a friend of ours helped me get him in the back seat of the car laying down of course because he couldn't bend his knees, He was green. This day is still fresh in my mind.

He really didn't want to go to the hospital because he knew they really couldn't do anything for him.  A Dr looked at him said yes it is Reiter's Syndrome and sent him home with a set of crutches, Vicodin, & Naproxen.  He took one Vicodin and threw them away, he said it had the effect of drinking a case of beer without the bloating, he said he could see how it was highly addictive.

His ReA has returned off and on since then, usually when he is under alot of mental stress or has another illness of some sort. It can be just a stiffness to debilitating. It has traveled to every joint in his body.

He has the HLA- B27 gene -

Our oldest son which is 28 has since gotten ReA from a chlamydia infection. About 3 years ago, His just flared up again, we think this last flare up think it is also stress related.

Our nephew was age 11 when he was diganosed with ReA

And his 2nd cousin was diagnosed at the age of 21 with ReA

We know it is genetic and runs on his mothers side of his family, all males, but we don't think any of his relatives had ever been diagnosed before he had been.

For anyone looking for answers, I wish you luck. 

What we do know is that flare ups are usually cased by stress whether it is physical or mentally induced.

A definite trigger is Ant Acid medications.

My husband seems to think antibiotics could be a cure, but we have yet to find that treatment.

If anyone has any insights to anything I have mentioned I welcome suggestions, comments, questions. I know what a painful and discouraging disease it can be. It helps if there is support.

I have some update about my status. After 8 months of getting methotrexate (10 mgr) I stopped taking them, I already felt a lot better. It is almost 9 months that I have stopped it and my knees have been ok since then. I had a huge hair fall (although I was taking folic acid) while taking methotrexate, but that stopped immediately after I stopped medication.

I did water aerobics to gain back some muscle strength and it worked well. My doctor told me I should be careful in exercises because my joints (specially my knees) are the week spot now.

So I am telling this to you now. I was not careful but you, please be more careful.

I was rushing out with heels and I twisted badly my ankle. It is almost 4 months and it is still not fully healed.

So have that in mind and be more careful about yourself specially knees and ankles.

Hi,

I was wondering if you guys have read this research paper for treating chlamydia-induced ReA: http://www.physicianspractice.com/rheumatic-diseases/chlamydia-induced-arthritis-five-insights-and-possible-cure

Tldr: The research paper suggest that a combination of antibiotics (azithromycin + rifampicin) can remission chlamydia-induced ReA. Have you guys heard of this research?

I too am a victim of ReA that i got from chlamydia. My right ring finger is swollen first, and then my right knee blew up like a baloon. For 2 month my doc and I thought i got a knee injury from working out, and finally at end of 2nd month i was sent to a rheumatologist and I was tested positive for chlamydia. I haven't taken any meds yet, but i want to explore this option before taking Methotrexate or Hydroxychloroquine.

Plz do share if you guys have experience or knowledge of the research paper above.

This is my first post to this forum. I have had reactive arthritis since childhood. It first began when I was 10, and I am now 64. The good news is that I have learned how to stop it cold. Many of you may not believe me, but those who do may find substantial benefit from what works for me. 

My first experience with remission was when I was about 35 years old. My wife (ex-wife now) started drinking 2% milk to lose weight. I reluctantly started also using it for my cereal in the morning. I did not know why, but my symptoms decreased. My ex-wife started drinking non-fat milk. I reluctantly also started using it in my cereal. I also stopped eating ice cream because I was gaining weight. in a very short time my symptoms disappeared. Once I begin to think that milk fat might be a cause of my symptoms, I strictly followed a no milk-fat diet and avoided animal fat. To test my theory, and to succumb to my desire to eat ice cream, twice in a period of about 18 months, I binged on ice cream for a short while. My symptoms started to return, so I backed off. This minimal data (not sufficient for statistical proof) convinced me that my reactive arthritis was, at a minimum, aggravated by animal fat. Since that time, I have had some re-occurrences, including some fairly severe ones. Those re-occurrences generated additional theories about causative factors. In the worst re-occurrence, about two years ago, it was persistent daily Ibuprofen (only 400 mg per day during no-symptom periods) that was the culprit. When the symptoms got bad, I took more Ibuprofen, which in retrospect, only made matters worse. When I finally stopped the Ibuprofen, the symptoms disappeared in two weeks. I was taking some probiotics at the time.

The last recurrence, about 4 months ago, was due to a switch from filtered water to tap water (when my refrigerator water filter system stopped working) - specifically the chlorine in the tap water. By this time, I was thoroughly convinced that, in my case, reactive arthritis was a result of leaky gut[/b] syndrome[/b]. I connected the dots. It only took a few days, after buying a high-grade water filter, for my symptoms to be gone.

Here are the dots, connected:

1  A reactive arthritis episode is often preceded by a stomach or other infection.

2. For me, episodes have occurred after consumption of NON_ORGANIC milk fat. Note that non-organic milk fat has a bunch of antibiotics in it, and a bad balance of Omega 3 to Omega 6 fatty acids (as does feed-lot feed beef). I now can drink all of the ORGANIC full-fat milk and ice cream I want, without getting RA symptoms.

3. Chlorine in water resulted in an episode, and elimination of the chlorine stopped the episode cold.

4. Long term consumption of Ibuprofen killed off my gut bacteria. Stopping, along with taking probiotics, stopped my symptoms.

What does this mean? Leaky gut is the cause of RA in me. Maintaining healthy gut flora is essential to eliminating leaky gut. NSAIDS (Ibuprofen, etc) kill healthy gut bacteria when used for long periods of time. Chlorine kills healthy gut bacteria. Stomach infections, such as salmonella, kill healthy gut bacteria. Chlorine in water kills healthy gut bacteria. Antibiotics in milk (and other non-organic animal protein) kill healthy gut bacteria. Why would leaky gut cause RA? Leaky gut allows larger molecules to enter your blood stream from your intestines. These larger molecules are not ones your immune system expects, so when these larger molecules lodge in your tissues (especially tissues with minimal circulation such as tendons and cartridge), your immune system goes after those molecules, damaging healthy tissue on the way.

My solution:

1. Only have organic milk products, eat very little beef, and always try to eat organic grass fed beef when I do eat it. This does two things: good balance of Omega 3 to Omega 6 fatty acids (Omega 3 is anti-inflammatory and Omega 6 is inflammatory) plus there are no antibiotics killing off my microbiome. The hormones added to feed-lot fed beef may also be a factor.

2. Drink filtered water to avoid chlorine. 

3. Eat (in my cereal) some coconut oil a couple times a week. This kills off the candida in your gut to allow the healthy bacteria to propagate.

4. Take Krill oil (high in Omega 3, an anti-inflammatory)

5. Take Turmeric (anti-inflammatory)

6. Take probiotics. Probiotics are not all the same, so I read the labels and make sure I am getting a wide variety of strains in sufficient doses. I take more than one kind of probiotic, and put Trader Joe's plain kefir in my cereal because it has some strains I have not found anywhere else. I store the probiotics in my refrigerator to insure they stay alive.

7. Avoid sugar, because it is very hard on the microbiome. This also is true of sugar substitutes, so get off of the soda of any kind, and don't eat candy. I know, ice cream is also bad, which is why I do not eat much any more.

8. Occasionally drink some organic bone broth to help heal leaky gut.

9. Eat raw pickles and raw sauerkraut to get additional probiotics (also found at Trader Joe's or Whole Foods)

10. Exercise - push-ups and sit-ups help with lower back pain, riding bike keeps the cardio vascular system healthy, hiking does the same.

11. Go to a chiropractor once a month or so to keep things aligned.

12. Eat prebiotics such as raw onions, garlic, etc to feed the microbiome. Eat fiber. Inulin is fiber from Chicory and is especially good for helping the microbiome thrive. This item is only last because it is the last thing I thought of while writing this terribly long sermon.

May you all get symptom relief in the very near future!

John

first, my story - the way it all started was with an extremely awful shoulder injury that seemed to come from overuse working. it was all so strange, overnight it was so injured. i couldnt lay to sleep, i couldnt lift it to dress myself or eat. urgent care gave me a prednisone taper which made me feel 100% better, so i kept working and as the taper went down, i reinjured it worse than before. i had to quit work.

my left knee followed 3 weeks after the shoulder, extremely swollen out of nowhere. followed by months of backpain and inflammed spine and fatigue. now my wrists experience tendonitis too. this was almost a year ago. im slowly getting better.

1- if all of you diagnosed with reactive rheumatism had some infection detected and took antibiotics.

i tested positive for chlamydia after knee was swollen but my boyfriend tested negative and i had no symptoms at all. i did antibiotics and now test negative for chlamydia, but am told its hiding deep in synovial areas. hla-b27 positive. diagnosed reactive arthritis.

2-did you have to take synovial fluid test?

i cant remember now. i think yes, from my knee. it helped diagnose the reactive arthritis.

3- was anything visible in your MRI

no  i didnt have an mri. what would show up possibly from one?

4-are you ok now? How long you were or have been involved with reactive rheumatism?

im still battling it each and everyday. ive learned my limits and things that help and that dont. im 28 and cannot return to my normal life yet but i hope to within the next year. i am having a very hard time coming off prednisone...i taper down and then add more ibuprofen to feel less pain/inflammation which isnt a good trade off. im currently at 7mg prednisone daily and probably need to go on sulfasalazine, but i really dont want a heavy, lifelong drug if i can avoid it.

5- what natural remedies and diet helps you

acupuncture, massage meditation swimming physical therapy and an anti inflammatory diet and lots of rest. i need 10 hours a night to feel normal. yoga and stretching have surprisingly really hurt my body this year as ive tried to add them. some of my most excruciating pain has occured because i tried to do a 30 minute extremely simple yoga video or stretch. its a waiting game. i always felt those were right activities, i just wasnt ready. and i was right. after 10 months, i am now able to lightly stretch and feel better instead of worse.

one thing that happened both good and bad over the past year was that i had two trips i took. i went way up on my prednisone to get through them so it messed up my taper schedule. thats the bad part. the good part is that on 15 to 20 mg prednisone i got my body and muscles moving in ways i hadnt used since sick. it took a hit on my mood...changing my prednisone dosages is really hard on my emotions and sense of self. i get in a weird mental place unless i am on a dose for at least a week before changing, but dancing at a music festival with friends and scuba diving with my boyfriend....i wouldnt trade those experiences for anything, and i think ultimately, it allowed me to move forward in healing.

Hello Ambitious,

You can see my previous post on here for most of what my reactive arthritis has consisted of,as of January it will be two years.I appreciate the input of yours and the other patients on here for what works for them.Mine started from C-Diff which  I contracted at the hospital while caring for my brother in law from due to an explosion.He had it and did not get confirmed and on isolation until after my visit.Those spores live on everything including the railing on the bed.

I went a month until diagnosed with it.The day after my colonoscopy I woke up with what I thought pink eye,and my knee was sore and swollen.I had RA so did not think too much of the knee.Then the right eye became inflamed  swelling in right ankle started.Knee and ankle became as big as an elephant!I was unable to hardly walk and never experienced  so much pain in my whole life.Well multiple symptoms followed. So answers to your questions as follows...

1-I took Flagyl for the C-Diff 

2-I had synovial fluid tests on both knee which the nucleated cells were extremely high,and ankle where it had blood and reflected that it was hemorrhaging into the joint.

3-No MRI just 36 standard X-rays!

4-It will be two years January ,now have both ankles swelling and tendinitis.I am now on Methatrexate injections weekly which has increased to 25 mg. .I have given that up(my Dr.will be surprised) it was not benefiting me.So right now nothing.

5-Have not tried the natural foods and very much considering! I have been researching.I started taking Tumeric a month ago,I think I need to increase it. 

I do not use dairy too much,but I do love my candy and sugary foods.

I even switched  to stevia from Splenda (didn’t last long 😫yuck!)ha I know that your diet can make a difference with many diseases.

Thank you for your input and diet regimen.

Angela

Hi.

I've been living with ReA since 2011. Shortly after my diagnosis, the medication I was prescribed almost killed me. Luckily since 2011, I have not had any flare-ups until this past June. It was brutal. I couldn't walk and the pain was unbelievable. My rheumatologist put me on Humira but I recently stopped taking it. Does you have any foods to avoid or that you go to in order to prevent arthritic symptoms?