Re: Joey: Reiter' as a chronic condition

[Guest guest]

Hi Rob

You're right that the majority of people here seem to have a

persistent form of the disease. But it does not logically

follow that the majority of people who get Reiter's develop

a chronic form: You're surely more likely to join a forum

like this one if you're coping with a chronic form of

disease, rather than if you have a one-off occerance. I

myself left the listserv for 4 years while in remission

(because I wasn't in need of support during that time).

I certainly agree that the disease needs aggressive

treatment though!

[Guest guest]

Hi

Yes, there are no doubt folks with Reiter's that suffer what seems to be one

acute attack of the disease and seemingly go on and never have another one.

What I have seen though is that Reiter's can and will make a comeback later on

in life often along with another member of the family of diseases.

As for leaving a list because you no longer have a form of the disease, I think

that is often short sighted. Nobody minds someone staying on a list even if

they feel they should no longer be on it due to a remission. Stay by all

means, you never know when someone makes a breakthrough in treatments for these

diseases and we find out about it here.

Having a chronic form of Reiter's is not that bad. You just have to adjust your

life and the lives of your family around the disease and think there is someone

out there who is a lot worse off. Watch Extreme Makeover: Home Edition for a

couple of episodes, some of the problems the folks helped in that show make ours

look like a trip to the park in comparison.

Doctor's or at least good doctors, will never tell you that they know all there

is to know about our diseases, they admit there is always something more. My

physiotherapist who worked for many years in a practice that dealt mainly with

AS, and the other spondyloarthropathies said something to me once that made a

lot of sense. She said words to the effect that one does not treat or cure

spondyloarthropathies, rather you just manage the disease to work to your

timetable, not its.

I guess I also have a different view of the disease because for ten years I

produced and directed the local segments of Jerry 's Labour Day Telethon

for Muscular Dystrophy. As part of the production, we begin reviewing the film

clips used on the same years telethon and move right into viewing new clips and

footage for the next telethon, 11 and a half months in the future. One cannot

look at those for that length of time without them affecting your own outlook on

life and some of the research for MS has helped in the Spondyloarthropathies and

their treatment and prognosis. Spondies just do not happen to affect as many

folks or have the " tear factor " that Cancer, Multiple Sclerosis, Muscular

Dystrophy, Lou Gherig's Disease (also a form of MS) do.

We also suffer a bit more as the Spondyloarthropathies are lumped in with

Arthritis and folks tend to think of Arthritis as an old folks disease, the

result of normal wear and tear on the body. We have to educate folks about

that.

Blessings

Fr. Dave

[Guest guest]

Hi Fr. Dave.

I agree with everything you say - you are very wise I was

just pointing out, though, that those on this list may be

less likely to have had a mild or 'one-off' experience of

Reiter's/ReA (such cases apparently do exist!) and might

rather populate the more serious end of the disease spectrum

- myself included.

I wouldn't like people like to get an unnecessarily

gloomy impression of what's in store with this disease. (I

suppose I am also an optimist and generally have a 'glass

half full' approach to life. I've had 3 major flares, over

12 yrs, with 3 and 4 yrs remission in-between times, so have

been extremely fortunate to have had long functional

periods.

Regarding 'one-off' vs chronic, my rheumatologist gave me a

rough '3 strokes and you're out' analogy: After each flare,

you have an increased chance of a further reoccurence -

after 3, it's very likely you may have a chronic version

thereafter. I'm still on my 3rd stubborn flare, so I suspect

my '3 strikes' are up!

[Guest guest]

Hi this is really interesting to me ive been diagnosed 9 years ago as a sort

of fluke ( was checked out by a dr in hospital for something else he said

reiters and sent me to my gp for antibiotics which worked but i had to take

long term to keep the flare down) ive never heard anything about the 3

strikes although i am learning something new about this everyday im on my

4th major flare now but this one hit primarily as urethritis and cystitis

then the joints joined in (thats how i finally figured out what was

happening) I supose that i may be moving into chronic as i am fairly certain

that my mother has this as well in the persistant form and i seem to be

following in her footsteps im still having a lot of relief on the prednisone

this is day 6 and i have had almost compleat relief of the urethritis and

partial of the cystitis my joints are up and down the ribs are hurting that

pulling apart feeling but my hands feel better i became extremely reactive

to all kinds of foods while the cystitis was going on i couldnt eat citrus

or berries or tomato spices or msg etc etc the worst reaction by far was to

coffee most of these things are recognized as bladder irritants but my diet

was so limited with the pain i was down to water and cucumbers and rice

cakes! i lost 35 pounds and now that im on the prednisone im ravenously

hungry ( i had a dream that i was eating last night!)i think that the food

sensitivity might improve on this drug because they are basicaly developed

allergies and the steriod might help shut down the reactions anyway i hope

that is the case! my heart is with all of you that are coping with this

today ... blessings.. Bella

[Guest guest]

Thanks to all for expressing your thoughts and experience w/ me.

I was able to nail down a mid-August appointment w/ a top Rheumie at NY HSS.

We'll see how that goes.

In the meantime, what could have trigger my Reiter's Syndrome. I've read

chlyamdia (never tested positive for any form of this and I had many test

including the delightful swab test) and other dysentary diseases (I did have H.

Pylori - how many people who have had H. Pylori come down w/ RS?????) E.

Faecalis continues to show up now and then in my urine / semen, could this be

the cause of my woes?????? Heck I've had medical exams w/ both the infectious

disease doctor and rheumatologist in the same exam room. They both shook their

heads and said. NO. It's not Reiter's Syndrome. Oh, and better yet, NO we

won't treat the E. Faecalis infection. I don't get it. At this point, w/

so much on the line for me (career, fatherhood, etc) I'd accept electric shock

therapy if I could rid myself of these symptoms.

Well - we'll see... we'll see.. we'll soon see.

Thanks to all again.

[Guest guest]

Hi All,

Thought I'd drop a quick note and advise of one trick I have learned for tx

of recurrent urethritis. I was dx 10 yrs ago...and the first tx consisted

of about six months of doxycylcine. I now take a one time does of 500mg

Cipro and 1gram of Zithromax....and the urethrits goes away.

-robert

[Guest guest]

Hello thanks for the advice to try the antibiotics for urethritis they have

worked for me in the past too ( taking zythro long term put my reiters into

remission 2ce) unfortunately for me this time none of them worked we tried a

" wide " variety because i have also had cystitis type pain and been really

reactive to irritants the antibiotics all put me over the edge in pain i

still think that they are worth a shot it is so important to have a dr who

is willing to try different things my gp listens to me and im geting better

now on prednisone I would imagine it is easier to get treatment from a dr

who has had success putting it into remission before but i think that

getting taken seriously is the most important and difficult part goodluck

and best to everybody Bella

[Guest guest]

: If you wait on these over paid men to cure you, your in for a long wait.

You will have to do it on your own. Start by cutting out food groups that could

be causing problems. Try different supplements. Look into tests for Mycoplasma

and the use of certain Antibiotics as well. I got better! You will too. You

won't with drugs that knock out your immune system though!

MODERATOR'S NOTE

does not support one treatment over the other for our diseases.

Fr. Dave

[Guest guest]

wrote:

<< In the meantime, what could have trigger my Reiter's Syndrome.>>

Hi ,

Have you ever had any type of poisoning, such as Salmonella? That is what

triggered my Reiters. I've been dx'd as HLA-B27 neg and most of the doctors

I've seen have told me that I don't have Reiters either. Me, being a female

and being neg. it is very hard for many doctors (who go by the 'old' book)

to say that I, along with many other females, don't have Reiters.

Good luck to you,

Dawn

[Guest guest]

Dawn:

I suffered a really bad case of H. Pylori in the summer of 2004. Since then

my problems have snow balled. I am also HLA B27 negative. Not sure how or

where I contract the H. Pylori bug. But I can tell you this.. I got hit w/ the

bug a few months after I started wrestling in a hot sweaty martial arts studio.

I later learned that many of the guys had H. Pylori .. .Ringworm and other

infections. E. Faecalis shows up ocassional in my urine and always in semen

cultures. Not sure what this all means.

Thanks.

[Guest guest]

" : If you wait on these over paid men to cure you, your

> in for a long wait. You will have to do it on your own.

> Start by cutting out food groups that could be causing

> problems. Try different supplements. Look into tests for

> Mycoplasma and the use of certain Antibiotics as well. I

> got better! You will too. You won't with drugs that knock

> out your immune system though! "

This comment id dangerous, ill-informed and goes against

current rheumatolgy expert opinion! It is certainly

anyone's right to experiment with eliminating food groups or

adding supplements etc, however the only methods of

precipitating a remission of this disease, is by the use of

the 'disease-modifying' (DMARD) drugs, most of which are

immune-suppressing. It (remission) has happened for me

twice, while on sulphasalzine and methotrexate.