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Reiter's Disease or Reactive Arthritis (NEED INFORMATION)

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Posted 6/15/2005 6:50 PM (GMT 0)
My friend was just didagnosed with Reiter's Reactive Arthritis following a bout of diarrhea.   I am not at all familiar with this type of arthritis.  Can any one tell me about this disease, symptoms, triggers and prognosis.  I have researched it on line, but am looking for personal comments and experiences.  Thank you.
Posted 6/16/2005 6:53 PM (GMT 0)
Do a Google search and you will get the info you need. Susie
Posted 6/16/2005 8:40 PM (GMT 0)

Straydog,

Thank you for your reply.  But as you will note in my post, I have already researched Reiter's online.  I am looking for people that might be willing to share their personal experiences with the disease.  So if anyone, any additional information above and beyond that on line, I am very interested.  Thank you again.

Posted 6/23/2005 5:47 PM (GMT 0)
dear Stella Marie,

hello! i do not believe i have ever wrote to you before; but i've a nursing background along with microbiology and infectious disease. a while back i had a young man with Reiter's Syndrome. his history started with a UTI and urethritis and also conjunctivitis. he got it from a bacteria which was sexually transmitted (it's usually chlamydial or gonnorheal) and he did get a reactive arthritis in the hands and knees.

since you mentioned your friend had it after diarhhae....he or she might have gotten some fecal bacteria that got into the urinary system or some other way.

all infections wether it be bacterial like Lyme's, syphilis, chlamydia, staph or strep if left untreated will develope into an arthritis.

normally, if whatever triggered this Reiter's was contratcted from an outside source the course of treatment is great using tetracycline antibiotics and perhaps a few other antibiotics. the quicker the better so make sure your buddy is seeing a doctor.

things like this are weird! if we have a sore or something and get violent diarrhea WE MAKE OURSELVES SICKER SOMETIMES!!!!

so yea, i love bugs! so i like talking about this type of stuff. the young man i treated did well....but you have to keep track on how you are feeling. be vigile of achy joints and muscles and flu-like feelings. some bloodworks might be repeated a few times.

it's amazing  how many organisms LIVE on our skin!!!! stuff that i had no idea!!! when i was in school i was like "yuck! e-coli and chlamydia are natural stuff we carry?" and fungus and all that gross stuff!!!!!!!!!!!!!!!!!!!!!

let me know how it goes. wishing the best. i'm curious on how this turns out. please keep me posted on what happens okay? i hope this was of some help...if i think of anymore cases i remember i'll post them. i'm good friends with a microbiologist if you need any specific advise or thoughts.

sincerely,

erin

Posted 6/23/2005 7:43 PM (GMT 0)
Thank you ever so much.  Your information was extremely helpful.  I appreciated that fact that you took the time to reply.

Posted 6/24/2005 2:04 PM (GMT 0)
Stella, welcome to the arthritis forum. Sorry to hear about your friend. It hurts to find out that you now have a chronic illness from something as simple as the trots. My prayers are with your friend. It is great that you are supporting them by finding out all the info you can. Keep up the great friendship.
Oreo
Posted 8/13/2005 12:24 PM (GMT 0)
My 9 year old daughter was diagnosed with Post Strep Reactive Arthritis. This was after she was treated with 3 different antibiotics for Strep Throat. She began by complainin of leg pain, which I attributed to strain as she plays soccer. Within two days, the pain was so intense she could not walk. I immediately took her to the ER where she had a WBC of 33,000. She was admitted to a children's hospital where they did hundreds of tests. They were ultimately trying to determine if she had Rheumatic Fever. She was in the hospital for two weeks with arthritis in all major joints. Her kidneys began to fail and her blood pressure dropped to 62/36 with a heart rate of 52. The treated her with several antibiotics and began giving her steriods. Within two hours of her frst steriod treatment, we noticed marked improvement. She was able to go home after 3 days on the steriods and continued steriod treatment at hom. It is now 4 months since her hospitalization and she continues to have arthritis flare ups, but no where near the intensity of the intial onset. Aleve seems to help with the inflamations. She is also on a monthly injection of antibiotic for the next 5-7 years to prevent a recurrance of strep. Children with PSRA have an increased risk of Rheumatic fever with subsequent strep infections.
Not sure if any of this information will help with your friend.
Posted 8/18/2005 2:23 PM (GMT 0)

I just joined the community today and saw this message.  Hope the reply isn't too late to help.  I'll warn you now that it will be a lengthy reply because the condition causing the Reiter's presented as many problems as the Reiter's itself ended up causing.  I went from being very healthy and active to feeling like a worthless sick glob.  I did have Reiter's for years and no doctor figured it out until after the fact.  I had urinary problems caused by a grapefruit-sized growth surrounding my left ureter. It was removed and I no longer have the bowl symptoms or abdominal pains I once did, but my urinary infections still reoccur to this day.  Because my kidney hadn't drained right for many years, I guess maybe some permanant damage was done and I may always get UTI's.  For seven years I had arthritis all over my body but my knees were the joints affected worst of all.  During that time I was misdiagnosed with IBS, Fibromyalgia, osteoarthritis, and a host of other syndromes.  My labwork showed high inflammation markers, protein in my urine, a potassium imbalance, and other odd results.  What I still live with are MVP, heart palpatations, Plantar Fasciitis, hypoglycemia, hypotention, unexplained hair loss, cold hands and feet, mouth ulcers, frequency urgency syndrome, TMJ, and other misc. annoyances.  I even had Chronic Urticaria which caused me to be broken out from head to toe for 7 months.  I don't know if these conditions are all caused from years of keeping infections or from years of urine not draining properly causing fluid imbalances and poisons to collect in my body or a combo of both.  During this past Christmas I had gotten to a point were I climbed upstairs to my Kids' rooms on all fours.  During that time I felt like I had another UTI so a doctor did a urinalysis and the culture showed Strep B.  After a 10 day dose of Levaquine my joints began to feel normal for the first time in 7 years.  It was then that we realized I had probably had septic arthritis (Reiter's) due to poor urinary function, and it took the Levaquine to knock it out.  about a month ago I began to feel badly again and another urinalysis was done this time finding staph.  I have an appt. in Sept. with a new Urologist to see if she can find some structural cause for the infections.  If your friend hasn't found a good doctor yet, I'd recommend a good Rheumatologist.  I've seen Cardiologists, Internists, Urologists, Rheumatologists, Dermatologists, Dentist, Allergists, Etc.  The Rheumatologist was the most helpful to me.  Hope this helps.

  

Posted 9/14/2007 2:11 PM (GMT 0)

Hello Everyone, This is my only my second posting here. I came across this one today and I also was diagnosed with "Post Strep reactive Arthritis" I  had just turned 39 Jan 4th/06  when I became sick with Strep throat. I have had strep before I think like maybe twice in my twenties, and recovered just fine. But not this time, I was really sick temp of 104 for 4 days straight I got into the doctors right away and was given keflex to fight off the strep. I was back to work in about 6 days after starting the antibiotic. about 10 days later I started with pain in my legs(kinda like I had run a marathon) which just got worse this went on for about 2 wks and then my legs ballooned. I went to the hospital where they did blood test and gave me shots in the hips for swelling (it did nothing) My blood work came back with Platelet count 678 and sed-rate was 47. They were unsure what was going on with me so I was sent home to follow up with my regular Doctor. I was actually bed-ridden for 9 wks with pain outta this world I couldn't walk, just to go to the bathroom I needed help. At night if I even tried to move my legs across the bed I would scream out in pain it was crazy. My doctor was trying to scramble to figure out what was going on. Waiting lists for specialists here in Ottawa was long. I was seen by hemo-globin specialists/ Rheumatologists. They starting thinking "Lupus" but after tons and tons of test Lupus came back negative(Thank God). And then in May i was diagnosed with Fibromyalgia(Sorry bad spelling)Well come Sept I got strep again not as sick as first time though and then again in Oct finally I was sent to a Infectiuos Disease doc who immediately put me on long-term pennicillin. The strep attacks stopped but the pain and swelling did not. Its now been 18 mnths since this all started and my Infectious doc diagnosed me in July/07 with PSRA a manifestation of Rheumatic Fever. I am presently taking Athrotec, ampitripyline, penicillin and sr morphine. I am very lucky to be starting @ the chronic pain clinic Sept 20 I am counting the days for this appt.Also my ASO titres have been in the 1000's for the past yr once i started pencillin in Dec we have got them done to 550 normal being100-150. This ASO means I am still producing anti-bodies to Strep. Unfortunately my doc doesn;t think the pain and arthrtis will go away but his main concern is Strep can attack the heart so i get echo-cardio grams done every 4 mths or so. I am yet to find anyone that has psra last for this long a time?????

Thank-you Leigh

Posted 9/17/2007 6:02 PM (GMT 0)
[does anybody have the same symptoms ?
reactive arthritis


hi
i had the same probleme as u . but my tests came always negative just antibody was find in my blood. i dont have swelling or inflammed joints just pain in all the joints also tmj and fingers pain. first i got pain in knees than hips and than all my body. now the pain r resonable but still problem. also docs said i have osteo but impossible to have osteo in all the joinst . still believe is ReA and nobody could find the reason.
is a mistery pain come and go and migratory pain in all the joints

pls reply glad to meet u

iris
quote="Leighanne"]I just joined the community today and saw this message. Hope the reply isn't too late to help. I'll warn you now that it will be a lengthy reply because the condition causing the Reiter's presented as many problems as the Reiter's itself ended up causing. I went from being very healthy and active to feeling like a worthless sick glob. I did have Reiter's for years and no doctor figured it out until after the fact. I had urinary problems caused by a grapefruit-sized growth surrounding my left ureter. It was removed and I no longer have the bowl symptoms or abdominal pains I once did, but my urinary infections still reoccur to this day. Because my kidney hadn't drained right for many years, I guess maybe some permanant damage was done and I may always get UTI's. For seven years I had arthritis all over my body but my knees were the joints affected worst of all. During that time I was misdiagnosed with IBS, Fibromyalgia, osteoarthritis, and a host of other syndromes. My labwork showed high inflammation markers, protein in my urine, a potassium imbalance, and other odd results. What I still live with are MVP, heart palpatations, Plantar Fasciitis, hypoglycemia, hypotention, unexplained hair loss, cold hands and feet, mouth ulcers, frequency urgency syndrome, TMJ, and other misc. annoyances. I even had Chronic Urticaria which caused me to be broken out from head to toe for 7 months. I don't know if these conditions are all caused from years of keeping infections or from years of urine not draining properly causing fluid imbalances and poisons to collect in my body or a combo of both. During this past Christmas I had gotten to a point were I climbed upstairs to my Kids' rooms on all fours. During that time I felt like I had another UTI so a doctor did a urinalysis and the culture showed Strep B. After a 10 day dose of Levaquine my joints began to feel normal for the first time in 7 years. It was then that we realized I had probably had septic arthritis (Reiter's) due to poor urinary function, and it took the Levaquine to knock it out. about a month ago I began to feel badly again and another urinalysis was done this time finding staph. I have an appt. in Sept. with a new Urologist to see if she can find some structural cause for the infections. If your friend hasn't found a good doctor yet, I'd recommend a good Rheumatologist. I've seen Cardiologists, Internists, Urologists, Rheumatologists, Dermatologists, Dentist, Allergists, Etc. The Rheumatologist was the most helpful to me. Hope this helps.

Posted 9/17/2007 11:04 PM (GMT 0)
Nice to meet u Iris:) I know 20% of people who get tested for RA who come back negative can still actually be positive!!!! Its tough being in pain all the time u  just keep going and hope the right treatment comes your way. I am going to the chronic pain clinic in 2 days It will be my first time going. I am praying this will be the beginning of me getting better mobility. Good doctors are the key:)

Thanks & take care

Leighski

Posted 9/19/2007 4:14 PM (GMT 0)

Leighski said...
Nice to meet u Iris:) I know 20% of people who get tested for RA who come back negative can still actually be positive!!!! Its tough being in pain all the time u just keep going and hope the right treatment comes your way. I am going to the chronic pain clinic in 2 days It will be my first time going. I am praying this will be the beginning of me getting better mobility. Good doctors are the key:)




Thanks & take care

Leighski


hi
thanks for reply but i ment reactive arthrtis(ReA) not RA rheumatoid arthritis.
if anybody has same symptoms as mine pls send reply. could reactive arthris lasts many years without any positive tests?just pain and tireness.
regards iris
Posted 9/20/2007 12:16 AM (GMT 0)
My husband has Reiter's Syndrome/Ankolosing Spondylitis.  Although often Reiter's is thought

to occur after a STD, it is not always the case.  It has never been determined how my husband's

arthritis  came to be, other than after some type of infection. He had foot problems and repeated

eye infections as well as pain and swelling in many joints before he was dx in 1984.He currently is

on Enbrel and methotrexate with very good results.  He has lost alot of mobility in his neck

and back as well as vision due to uncontrolled symtoms for many years before Enbrel came out.  He also has deformity in his ribs.  Today he still lives with some pain, but is much improved and he is able to function well at work and home.  Good luck to your friend.

Posted 9/20/2007 6:16 PM (GMT 0)
Hi Iris, I knew it was Reactive arthritis( which is what i have had for 18 mnths now) that you were looking for info on but I thought u had also made a reference to Ra sorry my mistake. Is there a specific test for REA??? My diagnose with REA came from the strep i had hense the name"Post Strep Reactive Arthritis" which from my symptoms and high Aso for a  long time  lead the doctors to conclude its REA but i didn't know there is a "Specific test" for REA pls let me know k.

Thanks Leigh 

Posted 9/21/2007 10:53 PM (GMT 0)

hi Leigh

sure r many tests for ReA : C reactive proteine, CPR, ASO, HBLA27 that prove inflammation in the body

all my tests came negative, no swelling no inflammation just migratory pain from joint to joints my left side is the worst.i have time when i had elbows pain , than knees , hips, shoulder  now i have in my feet sole. MRI didnt show anything  is like a mistery this pain.

still believe is ReA but incomon tha this usual ReA with swelling and redness in the joints

for how many years do u suffer. i have right now 2 years, started 2 years ago in Nov.

regards Iris

Leighski said...
Hi Iris, I knew it was Reactive arthritis( which is what i have had for 18 mnths now) that you were looking for info on but I thought u had also made a reference to Ra sorry my mistake. Is there a specific test for REA??? My diagnose with REA came from the strep i had hense the name"Post Strep Reactive Arthritis" which from my symptoms and high Aso for a  long time  lead the doctors to conclude its REA but i didn't know there is a "Specific test" for REA pls let me know k.

Thanks Leigh 

Posted 9/22/2007 12:21 AM (GMT 0)
Hey Iris

My that must be so frustrating. My hubby saids that i am also a medical mystery even though we know its from strep this reactive arthritis. My doc says typically rea tends to not migrate from joint to joint...well mine does and my "left side also" has always been worse than my right side.  So we are wondering if i could also be dealing with some sort of auto-immune disease. 2 yrs you have been dealing with this now is that 2 yrs consistently or do you have episodes i ask this because mine is consistent everyday its always there and from what i understand from my doc and researching the internet most rea cases only last 6-8 mnths??? Thats why my doc is questioning to whether or not its auto-immune. Mine has been my legs, ankles & thighs for the past yr and half its just been the past 4-5 mnths that is moved also into my elbows, hands and upper muscles on the arms.

]You are in my prayers for this condition to improve & for you to have a full recovery. Take care and i look forward to talking again

Leigh

Posted 9/22/2007 7:42 PM (GMT 0)
Hi Leigh
I have episodes not permanent pain in joints. on the beginning when startet(my both knees) i had almost every day than little by little became migratory pain from joint to joint.
on summer i was on the beach resort i didnt have any pain . now in fall when started the rainy days and cold i start to have pain in hip and ankles.
docs said could be osteo but i cant be osteo in all the jonts in mine opinion. is clear that something triggered this arthritis : virus or bacteria in the body.
nobody in my family had arthritis so ........do u take some meds now? i took mobic on the beginning than omega3. mag. calcium. now i slowed down just eating healthy food and physiotherapy, swimming biking. i dont pay anymore attention now cos in the past i did so many tests i spent a lot of money with docs on private clinics i was very sick and suffered a lot. nobody could tell me the right dx

u have so nice name like Vivian Leigh form movie "Go with the winds"
im so glad i met u online and we have almost same symptoms.

have a nice weekend
Iris

quote="Leighski"]Hey Iris
My that must be so frustrating. My hubby saids that i am also a medical mystery even though we know its from strep this reactive arthritis. My doc says typically rea tends to not migrate from joint to joint...well mine does and my "left side also" has always been worse than my right side. So we are wondering if i could also be dealing with some sort of auto-immune disease. 2 yrs you have been dealing with this now is that 2 yrs consistently or do you have episodes i ask this because mine is consistent everyday its always there and from what i understand from my doc and researching the internet most rea cases only last 6-8 mnths??? Thats why my doc is questioning to whether or not its auto-immune. Mine has been my legs, ankles & thighs for the past yr and half its just been the past 4-5 mnths that is moved also into my elbows, hands and upper muscles on the arms.

]You are in my prayers for this condition to improve & for you to have a full recovery. Take care and i look forward to talking again



Leigh

Posted 9/22/2007 9:01 PM (GMT 0)
 ((Iris))Thank-you for the nice compliment(on my name). God i wish i could go bike riding that is something i miss alot!! I am persently taking Arthrotec, APO Penicillin, Amitriptyline, & SR Morphine( but i will be switching to a pain killer called Hydromorph)The doc @ the chronic pain clinic said i should stop the sr morphine and try this one.

Is there anybody out that has taken "Hydromorph" before if so could you pls tell me a little about this drug??

 

So my little one who is 6 is recovering from her surgery yesterday she had her tonsils out. She is such a brave soul hopefully no more strep in this house So glad they took them out before winter sets in.

 

Take care

Leigh

Posted 6/5/2008 1:03 AM (GMT 0)

neely said...
My husband has Reiter's Syndrome/Ankolosing Spondylitis.  Although often Reiter's is thought

to occur after a STD, it is not always the case.  It has never been determined how my husband's

arthritis  came to be, other than after some type of infection. He had foot problems and repeated

eye infections as well as pain and swelling in many joints before he was dx in 1984.He currently is

on Enbrel and methotrexate with very good results.  He has lost alot of mobility in his neck

and back as well as vision due to uncontrolled symtoms for many years before Enbrel came out.  He also has deformity in his ribs.  Today he still lives with some pain, but is much improved and he is able to function well at work and home.  Good luck to your friend.

 My husband also has Reiter's Syndrome and it was not caused by an STD. We are also unsure of how he contracted it. He was diagnosed about a year ago by an eye specialist after getting uveitis. The arthritis began about 4 years ago in his foot (Dx with plantar fascitis) He struggles to walk in the morning and evening. He was put on MTX last year and it worked well for about 7 months then the pain returned and also appeared in his other foot. At the moment we are wanting to have another child so he is 2 months off MTX and struggling - in a lot of pain. We have also just switched to a new rheumatologist, pray that he has some better answers!
Posted 9/7/2008 9:12 PM (GMT 0)
Hello ((Istone))

Its Leighski here we had spoken a few months ago pertaining to how similair our illnesses were. I was diagnosed with "Post Strep Reactive arthritis  I have had it now for 21/2 yrs I am having a mri later on today it takes such a long tiome here in Ottawa i am very nervous about what the results will show

 I was wondering just how have you been feeling these days??? I hope your still around the board because i am eager to hear how you are doing??

Leigh

Posted 9/28/2008 4:19 PM (GMT 0)
Hi -

My son was also diagnosed.  I, too, am looking for same information.  Have you heard from anyone.  Jeannie

 

Posted 10/9/2008 5:20 PM (GMT 0)
I have been diagnosed with Reiters.  I am a 50 year old female and contracted it from a severe Salmonella infection.  I had sy

mptoms after the infection but no one could find out what the issues were.  I ended up with the ulcerative colitis and arthritis in back, neck, hands and severe foot pain and swelling.  I am just learning how to deal with this and have been on medication for about 60 days which is helping. 

Posted 10/26/2008 12:19 PM (GMT 0)
Hi

This is my first post in this forum. I was diagnosed with reactive arthritis about two years ago it was found to be caused by a bad gut infection. about two weeks after the infection both my ankles swell up and were very painful i went to the doctors and had some blood tests done while waiting for the results both my knee joints and lower back became very swollen and painful i also got pain in some fingers. I went from being fit to not being able to walk in the space off 3 weeks. My blood test results came back with high white blood cell count and i and i tested positive for the HLA-B27 gene which is commonly seen in people with reactive arthritis. I was given steriod medicine directly into the joints which really helped and have been taking Naproxin twice daily ever since. It took about 8mths to get back to normal but i still get problems with the joints on my knees.
Posted 4/4/2012 4:14 AM (GMT 0)
Hello,

I've had Reiter's Syndrome for the past forty years. Diarrhea or any other type of bacteria can start RS. You probably have determined if you are HLaB-27 positive. It's quite common for those with RS.

I remember getting one nasty bout of RS after I got cellulitis two weeks after kayaking in slightly polluted water. My left leg became swollen, my temp hit 102, and I was on IV anti-biotics for a day or so in a hospital. about two weeks after that I lost fourteen pounds. I did not regain that weight for another nine months.

You'll probably take methotrexate and/or Enbrel. Since I've had AS & RS I've also taken Indocin, Butazolidine (went off market for horses before humans!), Feldene, Motrin, aspirin, myochrisine (gold salt), Celebrex, Vioxx (yes, TIAs and atypical hemoplagic migraines from that one), sulfasalazine, Plaquenil, and several more I can't remember.

As I read through some of the posts I noticed that a few had problems with their necks and spines. Ankylosing spondylitis (AS) will affect your neck and spine. RS appears to be asymmetrical (i.e., no identical sites on sides of your body).

Yours,

Bill

Post Edited (UncleBill48) : 4/3/2012 10:28:17 PM (GMT-6)

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