Reiters

[Guest guest]

hi...hav Reiters, dx 2002 but Misdiagnosed in 1987, my symptoms first

appeared with very painful water infection, swollen genitals, and

then painful joints, knees at first, then gradually over a few weeks

all joints...then my eyes, pus eyes, swollen lids, and eventually

blood clots in my eyes(had a bad case)......as I read yur info, it

tells me that U ahv reiters, but altho I hav it, im not qualified to

say U could be having symptoms there....anyway...tahs my

input....Reiters is a rare disorder, althou u will come across it a

lot on here, which makes yu think its common....can U go back to yur

Doctors and ask more....also get a Blood test....I hav the defective

Gene HLA b27, mind U, ppl can still get it, even if they do not hav a

defective gene

goood luck JILL UK x

[Guest guest]

Any advice is certainly

appreciated.

Welcome to the group . While Reiter's is never nice news, you are lucky

to have it diagnosed so fast. Most of us old veterans weren't diagnosed for up

to 10 years and past it.

The statistics of these diseases sets up a picture of males, 35 -45 years old.

We know the male part is wrong and given the years of false diagnosis the age

profile is more likely 25 to 35 years of age.

+Dave

who is not the fearless leader of this group. That singular honor and many

others belong to Rick Hahn. The rest of us tagged along for the ride.

[Guest guest]

,

This is my first real reply to anyone. I am sorry you have developed

the symptoms you have. To answer you question directly I remember an

article I read when I first contracted ReA. It said there were two

types of progression:1. Acute, with significant inflammation in one

or two joints that resolved in 3-4 months. The second was a more

insidious slowly developing disease. It seems to be a pretty

accurate description. I consider myself in the later.

I developed Reactive Arthritis after a bout of food poisoning in

Feb/2002. About a week later, I developed subtle pain in the large

joint of my left big toe. However, it soon became very enlarged and

inflamed. I went to a podiatrist who thought it was gout, gave me

indomethicin and said to come back if it didn't get better. The

acute inflammation did reduce to a certain extent (It did create some

disfigurement and still flares up). However, I soon noticed subtle

pain in the joints of my right toes, just one or two at a time. I

was not even sure if I was really feeling any pain at all. Shortly

thereafter, there was no doubt that it was pain. Over the next 9-10

months it progressed in this subtle fashion. I felt grateful that

extreme pain and inflamation was limited to only both hands, feet,

ankles and wrists.

A rheumatologist told me to just take motrin (when this was just

starting), I started with 2400 mg of motrin/day that didn't control

the pain. I was then put on indomethicin and eventually

sulfasalizine, with tylenol for pain. I also began seeing an

accupunctarist and went to Bastyr University's physical medicine

clinic (naturapathic) for hot 'peet' baths and other treatments. The

increased circulation actually seem to make things more intense.

I was not getting anywhere with that doctor and finally got into see

the Rheumatologist my general practioner physician suggested (though

it took 2-3 months to get an appointment). He started me on

methotrexate in addition to the other two meds. Eventually, the ReA

spread to my spine, chest, shoulders, SI and hips. I was then given

Neurontin, which was the first med that buffered the pain and helped

me go back to work part-time. I was also given Tylenol #3 for daily

pain and vicodin at night. I continue with all of these today,

though the indomethicin has been replaced with Mobic. I was then put

on Remicade for over a year but with no remarkable changes. I was

then on Humira with weekly injections until last month, again no

great progress.

I will start with Orencia next week. Orencia is for those who have

not responded to other TNF biologic meds. Since, I still have

constant though pain, though the severity cycles, I decide to try

Mindfulness Based Wellness at Swedish Hospital here in Seattle. It

is based on Jon Kabat-Zinn's program with Mass Medical. It seems to

help the psychological aspects of things. So... according to the

articles you should resolve within a few months. A low percentage go

into the 6-12 month range and after that it is considered chronic.

In addition to information from your doctor, I would review the

articles available at risg.org and also just do general searches on

, google, etc.

I talked to my family about this as soon as I had a diagnosis (about

2 months into it). It has helped to be up front with work, family,

friends etc for myself. They are supportive, yet understand that I

can't do things I could before i.e. firefighter, U.S. National karate

team (under the USOC), coach, and official, etc. I've not begun to

think that this can't be beat or appropriately dealt with.

Don't take my case or any one else's as " normal. " Everyone is

different. Stay positive, productive and otherwise as healthy as you

can. I wish you the best of luck.

Jay

[Guest guest]

Dear Jay,

I have read your info re Reiers with interest.

I do have reiters since 1983,in the begingning with

flare ups,however the last 5 years with serious

develpopments,bow legs and pain in my knee joints.

My Rheumataloog cant say for certain where I did get

it from,as the specialists are still tasting in the

dark.I did hear know that there two types,the acute

one and the slow chronical one.

In my opinion it can be contacted(the Reiters)in your

youth without any symptomes and later.when you get

older and less resistance to illnesses,devevelope

seriously,I got today CELIBREX.and

antibioticum=DOXYCYCLINE.BUTAZOLIDIN and PREDNISOLON

DUMEX.i AM NOW WALKING WITH STICKS,BUT HAVE TO REST

AFTER 5 METERS,SOMETIMES i GOT PAIN IN MY BACK(PELVIS)

AND then i willl be " cracked " a handeling known by

chiropracts dokters.

Well,according to the doctors my cartiliage is

gone,there some new treatment,but I dont for sure

where to get it=Cartilage replacement.

Hope you have mote info.

Kindest regards,Rob de Jong

--- farrelj0 <jfarrell@...> wrote:

> ,

> This is my first real reply to anyone. I am sorry

> you have developed

> the symptoms you have.