RE: New member (heres my story)

[Guest guest]

hi im new here too i just joined last night im a 35 yr old fem but i came

down with this after contracting a nasty bout of chlamydia at 15 of course

nobody knew anything about reiters back then it took until i was in hospital

for something else at 24 and so racked with joint pain i couldnt get in and

out of the tub that a dr who had been following dr.gabe mirkin stuff checked

me over and said hey you should try some antibiotics for that there

arthritis! so i did and had an amazing remission ( i thought total recovery

at the time ) but when i went off the zythromax it came back so back on

again then it settled for a few more years then after i had my daughter the

joint pain again and my vision went all foggy but by the time i saw the eye

dr it was better this time the antibiotics didnt work i ended up on a slow

recovery with alot of accupuncture and chinese herbs and another remission

for 1 and a half years then one day i woke up with a crazy painful bladder

infection ( i thought) and no antibiotic worked and nothing else (vitamins

cranberry herbs creams cystoscopies )worked and i had urethral calibrations

and i saw 3 urologists and 2 gynocologists and 3 gps and then the hospital

staff in emerg 2ce i had tons of drugs and treatments that did nothing but

make it all worse and a couple of days ago i went online to check some

reiters stuff(i was officially diagnosed 9 years ago its right there in my

file had anybody bothered to look!) well my hip and one knuckle have been

acting up so i thought i will have a look online and oh my there it is i had

no idea that it could manifest as urethral and vag pain i have cried myself

to bed every other night for 15 months thinking i had interstitial cystitis

or cancer or ???? my gp has given me a week of prednisone to try to calm it

all down and im trying drops of dmso /water into my urethra to help with the

pain and swelling i am also taking small doses of gabapentin which has been

the only thing to help with the pain which is not too sedating( i could take

stronger but i have liver and kidney damage from my youth when i lived hard

so my tolerance for codiene and others is not good im a single parent so i

really have to be on the ball and cant be drugged)im happy to have finally

figured out what the h is going on and terrified about taking the prednisone

and the prospect of dealing with this for the rest of my life im so greatful

that this list is here so we can share info and support i have had other

rare diseases in the past and it is hard when you are all alone with it i am

sure i know more about reiters than my dr but i didnt know it could hit as

urethritis! and appalled that the best urologists and rheumatologists in

town were not the ones to diagnose me it was a duty dr at the hospital and

then me checking the internet i dont feel like i can trust the drs its a

bit sketchy well my best to you and all others reading this i hope i can ask

for advice here especially about where im at right now this is my first day

on the prednisone 6 more to go it is so true about the unprotected sex i

worked in the sex trade from 13 to 34 and thought i was always really

careful but hey alot of these bugs can even be spread via oral contact so

what to do? i had my son( he is 14) read your post i want him to understand

how dangerous the infections can be he may be a gene carrier so he needs to

be extra careful blessings and best to you all Bella

[Guest guest]

Hi Bella,

My name is I live in Australia I am 55 years -a suffer of

Seno-negative Rheumtoid Arthritis,

Fibromyalgia, A.S.

There is help out there it takes time to figure out the whole diagnosis,

first you need pain relief so you can rest and make decisions.

I don't use any of the medications you use, I have Methotraxate injections

weekly, Endep (for all over pain, numerous other medication for the side

effect from the Arthritisis.

Doctors don't have charged of these diseases, I have found you have to take

charge, otherwise it is try this try this, (all I got was side effects)

Hang in there. If I can be of any assist please e-mail.

Bye Lyn

[Guest guest]

thanks Lyn today is my second day of the prednisone ive been doing alot of

running around and at the end of the day just feeling agitated and i dont

know if its the drug or just a tired out me Im glad to finally have the

first part of the puzzle in place realizing that this is the reiters

syndrome is a big eye opener. i am going to write a letter to send to all

the drs who have (mis)treated me in the last year and a half just to let

them know whats going on and what to look out for with reiters when they run

across it again. im alittle bit bitter but i will make sure the letter

doesnt give that away i just want to possibly spare someone else from the

run around. thank you for the support i am keeping my fingers crossed for a

remission but am totally in the dark about whether that is realistic at this

point i guess it is a wait and see. my best to you Bella

>From: " Mahar " <lindamahar@...>

>Reply-

>

>Subject: RE: New member (heres my story)

>Date: Wed, 26 Jul 2006 19:59:32 +1000

>

>Hi Bella,

>

>My name is I live in Australia I am 55 years -a suffer of

>Seno-negative Rheumtoid Arthritis,

>Fibromyalgia, A.S.

>

>There is help out there it takes time to figure out the whole diagnosis,

>first you need pain relief so you can rest and make decisions.

>

>I don't use any of the medications you use, I have Methotraxate injections

>weekly, Endep (for all over pain, numerous other medication for the side

>effect from the Arthritisis.

>

>Doctors don't have charged of these diseases, I have found you have to take

>charge, otherwise it is try this try this, (all I got was side effects)

>

>Hang in there. If I can be of any assist please e-mail.

>Bye Lyn

>

>

>

>

>

[Guest guest]

Hi Bella.

Something to cheer you up: The medical information on Reiter's/reactive

arthritis says that the majority of people only ever have one episode of it

and that's it. Another minority has periods of being in a 'flare' with

remission periods in-between - like me, so far, although I might have

actually become chronic, if this current flare never goes away The final

minority will develop chronic, unremitting symptoms.

So take heart, this might be the one and only episode for you. And even if

it isn't, there are lots of drugs they can try and we're lucky in some ways,

as there has been a real breakthrough in recent years with the continuing

development of the 'biologics' drugs.

On a personal note, I honestly believe I'm a stronger (and hopefully nicer)

person for having had to battle this disease - you know what they say " what

doesn't kill you makes you stronger " !

Hang in there, you're not alone!

[Guest guest]

hi endy thank ou s uch frthourageet know that this has strenghtened me and

helped me find some much needed clarity being in chronic pain reallyhelps

you pare your life down to whats really important!i have had 3 major

episodes of arthritis in my joints but this is the first time it struck

primarily my uro/gen tractmy pain on contact is down about 80% and this is

day three on the prednisone my bladder is still spasming a bit and my joint

pain is down except my hip. i hope this is the last that i see of it for

awhile!(or a really long time!)my mother has a long history of arthritis

chronic urinary infections endo/polycystitic breasts degenerative spinal etc

etc( i seriously suspect that she has the chronic condition of reiters our

symtoms and even the ages at which they have developed are uncannily

similarweve even been treated by the same specialists) and she has only

really been helped at all by long term prednisone. i am very curious about

getting tested for the genetic marker, also for my childrens sake. do you

know if its an easy test to get or do you have to be involved in studies or

working with specialists? also what are the " biologics " about ?thanks for

the bright side :)im feeling pretty encouraged today it has been along time

since ive felt so close to even hoping to end this ! ( this has been a very

debilitating flare with not realizing the cause my anxiety has been as bad

as the actual pain)my best to you i hope you are having a smooth day Bella

[Guest guest]

Hi Bella

Keep your chin up..its hard I know..some days you just dont know how much more

you can take and then you do get through it.

Ive found on those hard days this website has given me extra strength because

you can chat to people who are in the same boat...people who do not have this

condition really cannot truly understand ..and that applies to the medical

profession...the condition manifests itself in so many different forms that

trying to get that definitive diagnosis is difficult and then trying to treat it

is even more difficult because what might work for one person may not work for

you.

But as mentioned there are a plethora of drugs out there that can

stabilise you to a degree.

Im into month 20 of my flare up (this is my 2nd) and am finding that prednisone

is having a fantastic effect on my pain levels..almost zero..although when you

mentioned that you were agitated, it rang a bell because thats what I been like

for the last 2 weeks. This is very unlike me- so maybe this is an effect of the

drug.

My Dr has only given me a course of 20 days as he is concerned about the long

term use of this drug so fingers crossed I am hoping that it might push

the flare up out of my joints !!

Regarding the genetic marker, you can get a blood test from your dr to test

HLAB27...if positive then you are predisposed to getting this condition. However

Im negative so the test is not 100% guarantee that it wont hit.

Regards

Mel

[Guest guest]

Hi again Bella.

Yes, as says, the genetic marker test is just a simple blood test.

Like , I am negative on the test, so at the end of day, it doesn't

help much

The " biologics " are a group of the latest drugs, like Humira and Remicade.

(I'm not on one, so the others can give you better information.) They are

mainly used when the older (and cheaper!!) drugs don't help.

Hope you're hanging in there and that your pain decreases. Don't be shy in

asking your doctors for some strong pain relief - we need them with these

diseases!

[Guest guest]

Hi

I'm glad prednisone is giving you some relief. Enjoy being pain-free and

more importantly; I hope it buys you some long-term relief.

[Guest guest]

Hi

Yes so far so good with the prednisone - I take my last tablet tomorrow so we

will see...but you know its just been great to be able to walk and not shuffle

...Im sure my 3 yr old who is extremely active appreciates having a 'normal' mum

who can walk to the park with her !!!

Also Im sure that once Winter has passed the warmer weather will just make

things so much more pleasant..although Im sure your winter in NZ is chillier

depending on where you live.

Regards

[Guest guest]

Hi thanks for the advice i am feeling really " up " on the prednisone i

am going to be tappering down off it my response with the pain has been very

good so far (about 80% pain relief on urethral contact and 60% diminished

pain in my bladder and my hand joints are totally settled down in just 4

days it is amazing (fingers crossed now) the only strange pain of it is that

my ribcage is aching really bad like it did throughout my pregnancy with my

son it felt like my ribs were pulling apart at the middle (my drs thought i

was nuts or had heartburn!) i will pursue the blood tests for the gene

marker im very curious as my mom is sick with all the same symtoms over the

years and is only helped by prednisone.

My GP is sympathetic with painmeds but i dont really get to look after

myself like that as a single parent with a 3 and 14 i just cant afford to

take them i have scripts in the cupbaord for pain meds that just sit there i

find they hit me too hard and the side effects arent worth it or the kids

need to be driven around or ??? a bizillion other things need doing its a

rare thing when i get to a place that im willing to deal with the pain med

hangover as well as the original pain the next day( i have kidney and liver

damage so the meds take longer to clear and are pretty harsh on my body) Im

praying now that the prednisone will put this flare behind me and i can

rebuild my health and push gently forward i feel like i know what to be on

the lookout for in the future. thanks again for the support hope you have a

good weekend Bella

>

[Guest guest]

Hi Bella

I'm so glad you're getting relief from the prednisone. It

must be so hard coping with this disease and looking after

children at the same time. I have a 12 yr old daughter, but

she is a big help to me now and is old enough to understand

that I can't do all the things I usually do, at present.

You're welcome to email me privately any time

(wjkh@...), if it helps to have contact with a

fellow 'sufferer'

[Guest guest]

Hi

It must be a real challenge coping with the disease and caring for a 3 yr

old! We're having a cold winter in New Zealand - most days the temperatures

are around 10 degrees - and we get bonus wind chill factor, with southerly

winds coming from Antarctica! We wear a lot of wool, thankfully we've got

way more sheep than people

[Guest guest]

Hi

I have a very supportive husband who is always helping out and also Sophie is

looked after 3 days a week so that helps me a lot and her too as she can then

get out and do kid stuff that I havent been able to manage.

I have experienced the chill as I used to work for Mount Cook Line and spent a

lot of time in NZ especially Christchurch & Queenstown during ski season- it is

just the most amazing country but just a wee bit too cold for me and my

arthritic bones these days !!