Reactive arthritis

[Guest guest]

thanks for the info Michele. Teri

[Guest guest]

I read somewhere on this site that reactive arthritis is always

gone within 6 months by definition. Jana

[Guest guest]

Are Reactive Arthritis and Reiter's the same thing? They sound very similar in

that they occur after a stressor as your earlier illness would have been and in

that Reiter's is asymmetrical in joints as opposed to RA which has a usual of

both knees or both wrists or whichever joints being inflamed at the same time.

If you have Reiter's there are a couple of support groups I have found to be

very helpful over the past 7-8 years on the net.

Meanwhile, not to try to disappoint you, but while some ppl have a brief flare

of Reiter's and never have another minute's trouble, there are those who have it

in various forms for the rest of their lives. Not a fun option, but to me it's

preferable to find out how to deal with the in the best way possible and try to

stay with the most useful program--easier--MUCH easier said than done.

I hope you find what works for you and you are able to have a doc who will allow

you to stay with the program that works best.

Myra

[Guest guest]

Hi

I'm not sure what to tell you except hang in there and hope for the best. There

are three things that could happen to you. It would go away forever soon, come

back now and again or become chronic and never go away. I suffer from chronic

Reiters' Syndrome. All you can do in this case is try to find the best meds to

treat it and try to make the best of a bad situation. I know this isn't

encouraging, but there is life after Reiters' Syndrome. I'm hoping that in your

case it will leave and never return. Please keep everyone informed as to what

is happening. Take care.

Peggy

[Guest guest]

Good Morning!

I too was diagnosed with Reactive Arthritis last month! I came down with the

" flu " at the end of July and then all heck broke loose. I had SEVERE shoulder

pain then it went to my back, finger, foot and then my knees. I went to an

ortho for my shoulder but then as things were getting kind of weird I went to my

internist and after blood work results came in he suggested I see a RA doctor

ASAP. He is wonderful! I was diagnosed immediately. I went thru HELL. I too

am on prednisone. I am also on Vioxx and Doxycycline. I am feeling MUCH better

and am back at work. I started physical therapy last week and it is very

helpful. I'll see the doctor next week and hopefully I can get off these meds

soon. I am 46 (was) very healthy and always active. I am thankful this will go

away (hopefully soon)!! Right now my foot and finger are still bothering me. My

knees are sore too but I think a lot of the pain has to do with the physical

therapy.

I am so happy to talk with someone about this. I am sorry you have it too but

we have to stay strong and think positive . Keep in touch!!

Dora

[Guest guest]

>From: " poplitealgirl " <poplitealgirl@...>

I am a 28 year old female with " Reactive arthritis " . I am otherwise very

healthy and fit, someone please give me some promising facts that there is a

light at the end of this

tunnel!!!!!!!

Hello, there is light at the end of the tunnel. I was diagnosed at 30 with

RA - I was a UCLA athlete, snowboarder, kickboxer, you name it. I am now 32

and first of all I'd like to congratulate you for being a fighter and

pushing through the pain and still working. My SDI (state disability

benefits) ran out and I am working full time as an operations manager for a

software training company.

My experience was that the prednisolone had initial prodigious results, but

I quickly developed a bad temper, huge abdomen, moonface and the pain didn't

subside even though the inflammation did.

What did work for me was the fentanyl patch at a low dosage with morphine

for breakthrough pain. I was able to walk across the room with no pain and

even went snowboarding, rollerblading, etc.

I don't know for you which is worse - being on pain meds while you're

working or dealing with the ADD aspects of untreated chronic pain. I

believe that choice is yours.

When I 'm not in a flare up I can work without any medication at a pretty

regular rate - that is the " light at the end of the tunnel " that I want to

let you know about. My RA has been traveling in flare-ups which are fewer

and farther between. I'll let you know that my first flare-up was the worst

and then they started subsiding.

Please feel free to contact me directly at DoctorMaya@... (I'm starting

UCLA full-time Pre-Med next week) if you want to discuss this one-on-one.

[Guest guest]

My understanding is that Reactive Arthritis is the current term and Reiter's

Syndrome is an old term that has fallen out of favor with the medical

profession. Hans Reiter was a Nazi sympathizer who did not describe

Reiter's Syndrome first and he did not describe it accurately. My

rheumatologist prefers the term Reactive Arthritis and so do I. To me

saying that I have Reiter's Syndrome is like saying I have Dr. Mengele

syndrome.

Janet in SF

ReA since 1973; diagnosed 1997

[Guest guest]

Hi I Have 5 children, I Hav ReA, my Rhumatologist told me that as I hav HLA

b27+ that its possible my children will ahv the same Gene, and Unless they r

susceptible they Will Not get this condition..... Goood luck xxx

[Guest guest]

Reactive Arthritis (ReA), also known as Reiters Syndrome (RS), should not affect

anyone's ability to have children. It is a well known fact that many women with

arthritic-type disorders experience a very noticeable improvement in their

symptoms during their pregnancy. Some of our female members have shared

information about their pregnancies in previous years related to this fact. It

would be nice if some of those members and newer ones would share about their

own experiences during their pregnancies to relieve some of the anxiety any

member may be experiencing in this regard now.

Any child with one parent having ReA would have the possibility of a 25%

chance to inherit the HLA-B27+ genetic marker (i.e., each child has a 1 in 4

chance of having this marker. That does not mean that if you have four children

one might have the HLA-B27 genetic marker, in fact, it is possible that none of

your children would have it, and the other extreme would be for all to have it.

It's a number's game that works for an entire country's population, not for any

individual family or person.)

That said, any child with the marker would not necessarily have the

condition triggered. Since it is not generally thought of as a contagious

disease, but more often as an auto-immune response triggered by a chlamydia

infection, or food poisoning, it might be possible for anyone with the genetic

marker to never have ReA triggered.

Plus, it is possible for an HLA-B27 negative person to develop Reactive

Arthritis. So not having the genetic marker isn't necessarily a guarantee that

a person won't get the disorder. Several of our members are HLA-B27 negative,

including me. Some 15% or more of ReA diagnosed persons are HLA-B27 negative.

ReA is a relatively rare disorder, hence our common frustration of having to

wait years for an appropriate diagnosis and appropriate medical treatment. Over

the years I've only had a couple of doctors, including rheumatologists, who have

ever treated another person with ReA besides myself.

I have four children ages 30, 28, 24, and 15. None of them have had any

problems like my own which began at age 10. I am now 55. Only one child, the

24 year old, has complained of any similar troubles or chronic pain within

joints or tendons. So far, she has had no other symptoms of possible ReA other

than urinary tract infections which could be from other causes. I have two

neices with Lupus. My mother suffered from rheumatoid arthritis, sjogrens

syndrome, fibromyalgia, and several other problems with symptoms similar to ReA

(i.e, urinary tract and intestinal problems), but also similar to her other

diagnoses symptoms. No one else in my extended family on both sides has ever

been diagnosed with ReA.

There is no need to be overly anxious about whether or not your children may

or may not have ReA, or any of the other spondyloarthropathy disorder this group

supports, or for that matter any other disorder. Be aware of your children's

complaints and speak privately with the pediatrician or other physician about

your concerns, but do not make your children anxious about the possibility of

also developing the same disorder as you have.

Knowing the possibilities can help if your child does encounter similar

symptoms to your own. Recent research seems to indicate that antibiotic

therapies may result in a reduction of symptoms as well as severity and length

of the initial flare-up if given as soon as possible after the triggering event

or infection. Some say that antibiotic therapy long after their initial

flare-up (we are talking years) has also helped them. However, this is a very

unpredictable disorder with flare-ups and remission-like periods lasting for

variable lengths of time. Even those who say they have had a permanent

remission may have more problems later in life they did not expect. Note Rick

Hahn's own concern for his recent symptoms after twenty years of remission. You

cannot predict the future one way or the other. Enjoy remission-like periods of

time when they occur for as long as they last. I'll pray that your flare-up

periods of time last as short as possible for you and for me!

Ray Neal, moderator

male, 55, HLA-B27 negative, ReActive Arthritis, Sjogrens Syndrome, Fibromyalgia,

Chronic Fatigue, Asthma, chostochronditis, and the occassional migraine

[Guest guest]

Dear Ray

regards the Chostochrondritis, what treatment do you have for that...i over

the eyars have suffered with that painful conditon too, although not in last

few years, I Know no one else that has ever experienced it.... mine took

months to leave me..... also your very informative email to the group regards

ReA and pregancy and having children was intereesting too, so thankyou for that,

My pregnancies incidently (all 6) were very comfortable reagrds ReA, althou

now my 18 year old daughter for the last year is experiencing terrible Hip

pain, but refuses to go to the Docs... I must somehow convince her to go seek

help... as it gets painful for her, other than that my children 18, 13, 12, 6,

5 are healthy

thanks again xx

Jills xx

[Guest guest]

Sorry, the post itself is at

http://www.risg.org/cgi-bin/w3t2/showflat.pl?Cat= & Board=main1 & Number=2015 & page=0\

& view=expanded & sb=5 & o=0 & part=

Rick Hahn

Rick@...

http://www.risg.org

[Guest guest]

Dear Ray,

Would you kindly describe your diet? Have you had or

do you have colitis or such?

Thanks,

Anne W.

[Guest guest]

rvolpe44 previously wrote:

Is the initial flare up usually the worst?

Each person's experience is different. For some the initial flare-up may have

been mild, hardly noticeable at all. Later the person develops pronounced

symptoms and may experience a viscious flare-up later. That's what happened to

me. I developed symptoms by age ten following food poisoning and histoplasmosis

back to back. I had considerable difficulties with urinary tract and arthritic

symptoms, eye inflammation, and chronic pain throughout childhood, teen years

and twenties. The most viscious flare-up of my life occurred at age 27, eleven

years later. I lost 45 pounds in three weeks and could barely walk.

I've had similar flare-ups throughout my life. The pattern used to be long

remissions with short flares, then even, then longer flare-ups with short

remissions. By figuring out through experience the things that seem to set off

the most difficult times I have now entered a period where I can almost prevent

the massive flare-ups and though I'm definitely not in a remission, I can live a

fairly normal life as long as I balance activity and rest and stick to a strict

diet.

Again, other people's experiences will vary.

Ray Neal, moderator

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[Guest guest]

Ray,You mentioned a strick diet.what does it consist of? It might help me...Pat

[Guest guest]

Thank you Ray. I asked because right now my symptoms are not too bad

and I am scared they may get worse. I wonder why diet plays key

role. I have recently purchased Barbara 's book from Amazon.

Once the book comes, I hope it can help some of the arthritis.

= Rob

[Guest guest]

Hi, .

It's amazing how my reactive arthritis resembles yours in so many

ways.

I am now 26, and it took a while 'til the doctors could assure me I

have Reiter's.

I have mild symptoms too, I don´t practice unprotected sex unless

with my fix partner.

I didn´t have anything in the eyes nor any skin problem. My left knee

and right ankle hurt, I had balanitis, which was imediately cured

after I started using a paste. That was what bothered me the most,

since I couldn't have a normal sexlife with that. My scrotum hurts a

bit sometimes, and that is TRULY annoying.

It all began 3 weeks ago, and many people thought I had gout, for my

uric acid level was 6,7. I started taking the medication but the

symptoms didn´t subside.

Lately I went to a fine rheumatologist and he had no doubt it was RS.

He prescribed me corticoids and doxycline. It´s working, for the pain

is lessened now.

Tomorrow, I'll pick all my exams. Actually I am kinda nervous 'cause

I read in many websites that Reiter's was one of the first effects of

HIV. I know I probably don´t have it, but I am REALLY nervous

nonetheless. I think everyone gets a bit nervous anyway.

So, one thing I´d like to ask is: how connected to aids is RS

exactly? And the second thing: how is this desease going to influence

my life? I'm not sure if everytime I get some bacteria from now on,

I'll have arthritis again.

My name is Guilherme, I'm from Brazil, and hope some people who have

RS for a long time or some experience dealing with it could somehow

provide us answers.

Thanks a lot.

[Guest guest]

Hi Guilherme,

I was HIV negative. I hope you had the same result. Regarding my

arthritis, after about 3 months, I'd say I'm about 70% better. I

just hope that the remaining arthritis subsides and never comes

back. I hope that most of the websites are correct that most people

recover from ReA. Regarding my balantis, what kind of paste did you

use? I still can't get rid of my balantis and it is very bothersome

during sex.

Thanks,

=

[Guest guest]

Hi June

I wondered the same I think she was extremely lucky to be able to trace it

back to the salmonella poisoning she got from the chinese restaurant, the

majority of us do not have that option and have to live with the disease and

no way of finding out what was the trigger or apportioning blame to anyone.

According to the ARC info Reactive Arthritis is normally short lived

interesting the Judge came to that conclusion.

Judith

Judith Brimsden

Purranza Burmese & Devon Rex

www.purranza.com

[ ] Reactive Arthritis

> Very interesting, Judith. Wonder how she proved her case.

> HugsJune

>

>

[Guest guest]

hi dave. you should do a search of the risg archives for some information. have

you spoken with your doctor yet? he should be the one to give you a prognosis.

too many variables for anyone here to make a prediction for you really.

warmest regards ...... james

davestokiecharles <davestokiecharles@...> wrote:

I have been diagnosed with the above complaint.

what is the prognosis as any personal info on this complaint

Thanks

dave

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[Guest guest]

Dear Dave,

I am sorry to hear of your diagnosis. I think you will find this group most

helpful. I was diagnosed in 2004 and have learned much from this group.

Hopefully, you have a good Rheumatologist who is helping to explain your

particular symptoms and choices to you. It can be very confusing. So as you read

the medical literature and these posts I support you to keep a list of questions

for your RH MD.

I understand that many people with ReA have one bout of this illness and then

recover fully. I sincerely hope this is the case with you.

A few of us do have more chronic cases. Also, many of us spent years seeing MDs

who could not figure out our disease. I became sick twelve years before I was

finally diagnosed. Who in the world would have connected chronic eye

inflammation with urethritis and inflamed ankle tendons? It was one of my good

friends who is a medical transcriptionist who kept saying, " I'll bet you have

something autoimmune going on. " Finally I was saw a Rheumatologist who tested me

for many things including the HLA B27 gene.

It appears to help if you are tested for the HLA B27 gene...and turn out to have

it. It seems to make a difference for the benefits and services available.

We all are so unique. It is a strange disease that can wax and wane. Some of us

are still working and only take lighter drugs like NSAIDs while others are on

disability and may take the stronger drugs like methotrexate, humira and embrel.

Many of us use some form of prednisone. (You probably have different names for

these drugs in the UK.) Many of us benefit from fish oils, dietary changes,

counseling, acupuncture, yoga, meditation, prayer, exercise and antidepressants.

For each person it is a bit of a trial and error process. I personally have a

holistic Family MD who helps me watch out for the possible interactions between

my drugs, supplements and herbs.

You will notice that some of us have multiple (often related) diseases which

further impacts our prognoses. If you read something in the posts that alarms

you please do not assume that ReA will affect you the same way.

I hope this helps. You have come to a good place for info and support, Dave.

Keep reading our posts and asking questions.

Sincerely,

in CA, USA

what is the prognosis as any personal info on this complaint

dave

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[Guest guest]

Hi and Welcome to the list Dave

You will find that night sweats do come with ReA and most of the other Spondy

class diseases. They tend to come and go. I am praying that this may be your

first and only flare up of ReA

+Dave

[Guest guest]

>Dave Thanks for the kind thoughts much appreciated

Regards

Dave

> Hi and Welcome to the list Dave

>

> You will find that night sweats do come with ReA and most of the

other Spondy class diseases. They tend to come and go. I am praying

that this may be your first and only flare up of ReA

>

>

> +Dave

>

>

[Guest guest]

Welcome to the group Miss

Sorry to hear your diagnosis and also your status as HLA-B27 Positive. That

is not good in a young person. I say young as my kids are older than you.

Just a joke. No doubt your students think you are much older.

I pray that you get relief from your pain. I know that standing and

teaching is going to be very difficult at times, but there is hope. When we

go into remissions we seem to have a new lease on life, only to get shot

down when the remission is over.

Then other times, folks go into remission and never get another bout with

the disease. We pray that could happen to you.

My first attack was in 1972, only they did not know what the heck I had

until I was finally diagnosed properly in 1984-85. I did go into a bit of

remission and decided to take up animating mascot characters part time which

turned to full time along with other duties. But that all stopped when I

had a silent heart attack in 1995/96, not sure now which year. I thought I

had the flu and the doctor in the walk in clinic ordered an EKG just in

case. Well my regular doc called me at home the next day and wanted to see

me, he told me at that meeting that I did not have the flu but rather I had

suffered a heart attack. He told me my mascot days were over and to make

sure he had contacted the outfits that I performed for and told them I would

not be back. For 2 of the 3 teams I worked for, he was the team doctor, and

the third one he phoned anyway.

Thankfully at the time I had just about finished all my seminary courses so

I had ministry to fall back on if required. But I got pensioned off for the

second time and my ministry became part time for a short while until I was

fully ordained as a Priest. Ministry is something I can do but not fulltime

anymore. This poor old body has just about worn out and my 66th birthday

fast cometh.

Again Welcome and really sorry to meet you under these circumstances.

Fr. Dave

[Guest guest]

Hi,

That is quite the coctail of meds. I have chronic ReA and in almost

2 years have never had a remission.

I have good days and bad days. I had to retire on SSD, I was

secretary at a middle school so I understand how much you are on

your feet, and constantly moving at your job.

I have been on Methotrexate for almost 2 years now. I finally got a

2nd opinion and I have added Enbrel and it is helping me have some

life. I also suffer with Fibromyalgia so my fatigue is tremendous.

If I do something one day, I rest for 2. Not a fair swap but, I am

lucky with my family and their continued support. I have 3 grown

boys, and one daughter who graduates this year. They all chip in,

drive me places, go to buy groceries, etc. Plus I am blessed with a

grandson who will be 5 soon and a new grandbaby due in July.

Somedays I try to accomplish one or two small things, like dust the

livingroom, forget vacuuming. Or work on the baby shower plans by

shopping on line for the decorations/plates, etc. 2 years ago I was

jumping on a trampoline and having fun, now I am sitting on the

couch with a painful foot blister, and so fatigued from shopping

yesterday.

I hope for your sake, you have some remission. I am always here to

send your gripes to and vent. We all need that in our lives.

This group is a great place to find support and information. Glad

you found us.

Kay

[Guest guest]

Sorry to say, I cannot tell you I have had relief. I worked at a

school, secretary in the office. I had to leave due to pain and

fatigue. I loved my job, I finally got back in a school office after

being in a development office of a college with 6 traveling boss'

I know some have remissions, I have had none in over 2 years. I also

have Fibromyalgia. It wears me out and my muscles are not strong and in

pain all the time. I take Flexeril at night for sleep.

I was on tramadol but it didn't help the pain, now I am on a

nuerological med. Neurontin to help stop the pain at the brain, and I

take darvocet which does not make me groggy. It does make many because

it is a narcotic.

I am on Enbrel and Methotrexate injections. I have a wonderful RH Dr

who is agressive and my old Dr had me on 1/3 the dose of mtx only. My

new Dr felt this was a crime, I was undermedicated for a full year.

Now, I am on a good dose and combo and even though I do not have

remission I have a few good days a week.

If you want to email, please do. Also my IM on aol or aim is rmsjohns6

you can also email me at that on aol. Just mention RISG. I belong to a

fibro board and help a group with anxiety issues.

Kay