I was wondering if anyone out there has been diagnosed with Reiters Syndrome (or do you know anyone with it). I was diagnosed with it 10 years ago. If you have it, what are your symptoms? I have always wondered if it was the right diagnosis. It began with bad feet pain (which at the time, they thought was plantar faciatis). That has never gone away, but I can minimize it by wearing cushioned slip-on type shoes. I can no longer wear any type of dress shoe or for that matter any type of tie shoe with out my feet and ankles starting to ache terribly. The problem has also moved to my neck and knees to a lesser degree, but if I wear a turtle neck , or pants that are tight around the knees, they start to bother me to. If I type too long (which isn't really very long at all, I feel like I am getting carpal tunnel syndrome where the undersides of my wrist and forearms start to get sore and hot. Anyone else have these types of symptoms? I feel like I am alone to battle this problem, and no doctor has been able to help. I feel like it is a problem with my connective tissues. Any input would be greatly appreciated. Thanks for taking the time to read this. Scott

I was diagnosed with reiter's syndrome at 19yo after an infection. The symptoms disappeared after a year on anti-inflammitories and have not returned for 30 years.

The last 3 weeks have been hell so I hit the internet to find help.

One ource recommends an extensive (in long term cases) course of low dose antibiotics, the URL follows.

I shall leave you to judge for yourself as my self treatment is in the early stages, which means little despite the success.

Have a read and let me know how you feel
THE Testimony http://www.geocities.com/larrylean99/arthritis.html
THE Practitioner http://www.rheumatic.org/

Good luck and I hope this has been of help to you
Ian

I was diagnosed with reiter's syndrome at 19yo after an infection. The symptoms disappeared after a year on anti-inflammitories and have not returned for 30 years.

The last 3 weeks have been hell so I hit the internet to find help.

One ource recommends an extensive (in long term cases) course of low dose antibiotics, the URL follows.

I shall leave you to judge for yourself as my self treatment is in the early stages, which means little despite the success.

Have a read and let me know how you feel
THE Testimony http://www.geocities.com/larrylean99/arthritis.html
THE Practitioner http://www.rheumatic.org/

Good luck and I hope this has been of help to you
Ian

I was diagnosed with Reiter's Syndrome, now called Reactive Arthritis 25 years ago. My description has been an inflammation and swelling in the ligaments and tendons of the system. That may not be the doctor description but it works for me. It began with heel pain, a fairly common effect. I was pregnant at the time and got considerably worse over the next 8 months. I couldn't walk and was in a great deal of pain.

Some of the symptoms are sausage digits, swollen fingers and toes, inability to lift a limb through its entire rotation, heel pain, finger joint pain, finger joints enlarge with bony stuff similar to RA. I can't wear any of the rings I had in my earlier years. The only permanent disfiguration has been the fingers and toes in the same manner as RA.

This arthritis is genetically marked with HLAB27+ and can be blood tested for. It has parallel illnesses of pseudocholinesterase deficiency and irritable bowel syndrome. My partner has had RS for the last 30 years and has IBS. I have the pd. I have had numerous bouts of flareups and remissions. I take tolmetin sodium, Tolectin 600, and it is definitely a magic bullet for me. Currently I take 10 mgs of methotrexate once a week to stay in remission and my hand hurts anyway. If I stay out of a flare for at least a year, we will try backing off the meth to see if it is truly a remission.

My partner has not been as lucky. He's been on prednisone for about 2 years and has decided to try the Remecaid treatment. It is a treatment for both the IBS and the RS.

This disease will mark you in your insurance but it is not a killer disease. It is treatable.

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So much to learn, so little time...

I was diag. with Reiters 5 years ago although I have been suffering the symptoms for over 20 years. I contracted Reiters after a bout of food poisoning while in the service. If you do a search on the Net you will find that some sites list some symptoms while other sites will list completely different ones. The truth is Reiters, or Reactive Arthritis as it is now known, is like the other 99 different flavors of arthritis. It has not been studied in any great detail and the medical profession continues to find out new info almost every day.

For example, until I read this board I had never heard of heel pain. Here are my symptoms, all chronic and acute:

Kidney Stones (14), inflammation and pain in the Hands, Hips, Lower & Upper Back, Knees (one knee has almost disintegrated), Elbows, and Shoulders, chronic prostate problems, iritis, sensitivity to light, chronic fatigue, dry eye syndrome, trigger finger, cervical degeneration C3 - C6 with spurs, vasculitis, Restless Leg Syndrome, mouth and tongue sores, minor joint deformation in my hands, and depression. Other than that I am fine :-)

Meds: Oxycontin, Methotrexate, Folic Acid, Carisoprodol, Hyrdrocodone, Lexapro, Cromolyn Sodium eye drops, Mirapex, Celebrex

I have been confined to an electric wheel chair since May and have recently had to leave my job and take disability. Before everyone panics and throws themselves off the top of their stacked pill bottles let me say that extreme cases such as mine are rare. (Lucky me)

So far I do not have heart valve problem or the facial myalgia. I do have one more strange symptom; every now and then I get a sharp pain right in the middle of my breast bone ? The first time I thought it was a heart attack. I was told that the Reiters can effect the connective tissue crossing the breastplate to the ribs. Anyone else have that one ?

Thanks,

DT

D.Taylor asked if anyone else had inflammation of the breastplate and connective tissue of ribs, that's where this all started for me about 5 years ago. The acute phase has now passed and now suffer only sporadic bouts of inflammation in coonective tissue between ribs and sternum. Others mention damage to heart valves..tell me more, as I have had problems with breathing during exertion and a specialist picked up a heart murmer...I did query him about heartand lung damage due to Reiters. ( Iwas give this diagnosis following a visit with a visiting rheumatologist...reactive arthritis) So far have no joy about the breathing, now am having problems with blood clots and the very latest while on Warfarin is a foggy right eye...diagnosis still in progress.
If anybody else can shed more light on any of this be glad to hear

A Reiters Syndrome Diary

Dec. 23rd, 2002
Spent Christmas in San Diego with family. While in San Diego I came down with a severe fever and ear infection and had weird painless blisters in mouth.

Dec. 28th, 2002
Flew home from San Diego. Ear drum ruptured and bled on flight back.

Dec. 30th, 2002
Went to doctor for ear infection. Dr. M prescribed antibiotic for ear infection and blood work up. Blood work up looked normal.

Jan. 10th, 2003
Developed urinary tract infection. Ribs and breast plate were very painful, hurt to breath. Had inflamation of ribs. Dr. H x-rayed my chest. The x-ray looked normal. I received my first prostate exam, (not as awful as I thought it would be). Dr. H prescribed Cipro, Vioxx and blood work-up. Also received a referral to see a Urologist, (Dr. C).

Jan 15th, 2003
Pink eye? At work a friend tells me I have pink eye. I don’t think it’s pink eye. My eye redness clears up in 2 days.

Jan. 20th, 2003
My left foot and large toe became very swollen and very painful. My left hip and pelvis are very painful. I could barely walk or get out of bed. Now what. Is this gout? Dr. P x-rayed my foot. The x-ray of my foot looked normal. Not gout, the blood work-up indicated uric acid levels are normal. Dr P prescribed Celebrex.

Jan 23rd, 2003
Kept my appointment with the Urologist, (Dr. C), even though my urinary tract infection cleared up a week earlier. I had to drop my pants again for Dr. C. This is getting a little personal. It is very uncomfortable having other people examining my privates. He tells me to turn around and bend over. Another prostate exam. Everything appears normal, but Dr. C wants to schedule a Cystoscopy and CAT scan. What I’m thinking is, “NO- WAY” No one is feeding a scope up my penis. I made a deal with him. If I have any urinary tract problems in the next week I’ll schedule the appointment.

Feb 3rd, 2003
My foot, hips, pelvis and lower back are very painful. It takes me about 20 minutes to get out of bed. I’ve been having night sweats every night for about ten nights in a row. I wake up completely soaked and need to change into dry pajamas. I made an appointment with any doctor at the clinic that would see me immediately. I saw Dr. M. I made a detailed list of all my symptoms since Christmas. I read my list to him. I told Dr. M that I think all the symptoms are related. He says my symptoms are probably not related. I feel he is not listening. He told me to stop taking all anti-inflamation drugs, except Advil.

Feb 10th, 2003
Now my left knee is very swollen and painful along with my foot, hips, pelvis and lower back. I make an appointment with Dr. H. Dr. H examines my knee. He says there is definitely something going on with my joints. He can feel the fluid in my knee and see the swelling in my knee and foot. Dr. H prescribed Prednisone (steroid). Dr H also has referred me to a Rheumatolgist. The soonest opening to see the Rheumatolgist is May 19th The blood work up indicated possible arthritis.
The Prednisone is an amazing drug All my aches and pains are almost gone by night time. I have enough medication for almost 2 weeks.

Feb 27th, 2003
My Prednisone prescription ran out a few days ago and all my aches and pains are back. I really like Dr. H. I’ve decided he will be my primary doctor now. Dr. H says I really need to see a Rheumatologist I told him the soonest they would see me is May 19th. He will call and try to get me in sooner. Dr H offers to put me back on the prednisone . I declined. Prednisone is not a good drug to be on long term. I also don’t want to mask my symptoms for the Rheumatologist. Dr. H prescribes Bextra (Anti-inflammatory).
I get a call the next day from Dr. S’s office, (the Rheumatolgist). They can see me next week. Wow, I guess Dr. H’s call to them moved me up on the list.

Mar 6th, 2003
Drive to Dr. S’s Arthritis & Rheumatology office. The first thing Dr. S does is sit down and question me about all my symptoms. I mentally refer back to the list I had put together for a previous appointment with Dr. M. Dr. S listens, takes notes and asks questions. He asks me if I had inflamation in either of my eyes. YES I had forgotten all about it, but I recall the friend exclaiming, “You have pink eye”. Dr. S says that he thinks I have Reiters syndrome which has a genetic component. All my symptoms are text book. Now he wants to examine me. I need to take off all my clothes and put on a hospital gown. I’m thinking at least this isn’t the urologist. He checks my feet, legs, knees, shoulders, arms and hands. “Now stand up and drop your underwear”. I thought I was safe with a Rheumatologist. Why do all the doctors need to examine a person’s privates
Dr. S removed the fluid from my knee and gave me a Cortisone injection. He also ordered a Blood work up, genetic test for the HLA-B27 gene and prescribed a Doxycycline and Bextra for a month.

March 18th, 2003
In the last week my pain level on a scale of 1 thru 10 has gone from a 8 to about a 3. My genetic test indicates the HLA-B27 gene is present, which is usually expected with Reiters syndrome.

May 15th, 2003
My only remaining joint pain is in my left big toe back to the arch. Dr. S states that I may always have pain in this joint. The joint seems as if it is fused. Very little flexibility in it.

May 20th, 2003
Came down with a virus. Sore throat and bronchitis. I had another Reiters flare up. Urinary tract problems and eye inflamation which cleared up in a couple of days. A few days later I started having joint pain in four of my fingers.

Oct 18th, 2003
I still continue to have joint pain in my left big toe back to the arch. Finger joints seem to be improving.

Im actually in the middle of a Reiter's diagnosis so Im still classed as 'incomplete'. I have joint pain and deformation in my ankles, knees, hips, lower back and shoulders and also inflammatory bowel disease, constant urethritis, mouth and throat ulcers, gooey watery swollen eyes, light sensitivity, reynard's, migranes and a million other little niggling probs. I take Vioxx at the min and Codydramol to deal with the pain.

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'Never judge a man till you've walked a mile in his shoes. After that, who cares? He's a mile away and you've got his shoes.'