Re: Joey: Reiter' as a chronic condition Not With Me....

[Guest guest]

Well I'm in remission! , if you want experts please read Dr. Ralph

Shumacher's work with Rieters patients. " Ralph Schumacher " was voted one of the

top Doc's in the country! Read of " Dr. Vase'ys " studies at The University

of Tampa where he has put people in remission with a combination of Antibiotics.

I'm one of them! Read of " Dr. Franco " in California who is the foremost expert

on Gulf War Syndrome as well as Reiter's and RA and Lupus. Several months ago I

lost a dear friend to RA who was on these wonderful disease modifying drugs. You

can't knock down the immune system without suffering horrible side effects. She

died of Cancer which is common with these DMARD drugs. It's time for this thing

to be turned right side up! I promise you this disease has been found to be

caused by several different infections and until we get these folks all looking

in that direction we will be spinning in circles. Let's put our faith in God and

our own common sense. If our

Arthritis was cured tomorrow there would be plenty of folks out of work. No

more canes! Less use of Advil , Heating Pads no more! No more Rheumi visits!

People would be spending their time doing what God wanted for them to do and

spending their money and time much more productively. We have the best " Critical

Care " in the world but when it comes to searching for cures and

prevention......When is the last on you have seen something cured? As a child I

spent my summers collecting for Jerry to help cure MD. Do you know how

many billions of dollars have ben spent! How about Ulcers? Ask the average Doc

and he will put you on Tagamet when he should be curing you with the appropriate

Antibiotics.

God Bless You all!!!

God Bless!

[Guest guest]

said " You can't knock down the immune system without suffering

horrible side effects. She died of Cancer which is common with these DMARD

drugs. It's time for this thing to be turned right side up! I promise you

this disease has been found to be caused by several different infections and

until we get these folks all looking in that direction we will be spinning

in circles. Let's put our faith in God and our own common sense. "

Fr. Dave: As moderator, shouldn't you be stepping in here? The above amounts

to scaremongering. I also think we should leave God out of it. (NZ is a less

religious country than the US!)

:

The problem for those of us with ReA, is that the disease can spontaneously

go into remission of its own accord (and seemingly flare up in the same

way). Even rheumatologists cannot be certain if a remission is caused by

DMARDS, eating popcorn (example of a food supplement) or is a 'spontaneous

remission'.

I'm very pleased you are in remission, but I was concerned you seemed to be

advising a newly diagnosed person not to take his Dr's advice and give the

(thoroughly tested) appropriate drugs a fair trial. How would you feel if he

took your (I assume flippant or mischievous) advice and refused to give any

drugs a try? What if his condition worsened dramatically and he was one of

the minority who developed life-threatened complications?

Sorry if I sound like a party-pooper, but this is a serious disease and I,

for one, am grateful to live in this modern age, where we have good medical

care and drug treatments.

I do agree there seems to be a valuable role for the use of antibiotics with

the disease (but in only some circumstances), but the use of foods as cures

is certainly unproven. And you are not acknowledging the role the DMARDS

has played in keeping many of us 'up and running' or in remission.

I prefer not to risk my health by trying unproven 'cures' and would rather

trust in my experienced, caring rheumatology specialist.

Re. antibiotics, I am currently on minocycline longterm and it has done

nothing for my joints. But, like the use of the DMARDS, what works for one

of us, won't work for all...

[Guest guest]

wrote:

Fr. Dave: As moderator, shouldn't you be stepping in here? The above amounts

to scaremongering. I also think we should leave God out of it. (NZ is a less

religious country than the US!)

Actually , a discussion like this is healthy but I would ask to use a

better choice of words. As a major list for Reiter's, Ankylosing Spondylitis,

etc., we have to listen to other views, even if we really do not like them. I

myself do not buy into 's argument as I have been around this disease for

way too long and have seen it do different things regardless of the treatment at

the time. Reiter's can go into spontaneous remission without any treatment and

as I can also vouch for, AS does the same thing with the pain and progression of

the disease. I have gone through periods of remission and thought I was finally

going to get some relief. Then I go and do something that sets it all off

again.

, I am happy you are in remission and pray you stay there, but when you are

my age and have listened to every healing treatment under the sun, you learn.

As has been stated by the list owner, Rick Hahn, this list exists as his

christian witness to the world and it is the extension many of us put first.

However, because we are truly international we do try to accomodate other

beliefs or no belief at all. So , I do ask you to tone it down a bit.

Fr. Dave

[Guest guest]

>

> Well I'm in remission! , if you want experts please read Dr.

Ralph Shumacher's work with Rieters patients. " Ralph Schumacher " was

voted one of the top Doc's in the country!

--------------------

,

I don't want it to seem like I'm piling on ,really; but you mentioed

someone I'm familar with . I " ve read some of Dr Schumacher's papers

about 4 yrs ago and he was not recommending antibiotcs at that time

except for those who where recently diagnosed with disorder..For someone

who has chronic Reiter's there's no proof that i know of which shows

that antibiotic treatment will put a person with chronic disease into

Remission..

There was a time in 2001 when I wanted very much for my doctor's at VA

to let me try 6months of Doxycycline and the Resident who wanted to help

told me to find some " proof " (not anecdotal evidence but scientific

proof) that antibiotics are definitely effective in the cure or

remission of the disease and she would help set the Protocol..

I spent many hours at New Haven Public Library and couldn't find any

real scientific proof with something like double-bling studies..I

found plenty of anecdotal stories about how much antibiotics " helped "

reduce symptoms. I got so desperate that at one point I called Dr

Schumacher at VA in Philadelphia...I left a message and he called me

back in 30 min and we talked about ten..I asked him point blank if there

was any sccientific proof that antibiotics were an effective treatment

for Reiter's patients after first 6 mos or so? There was a pause long

enough so that for a second i thought we had been disconnected, but he

sad " not really.. There was a trial study conducted in Finland but the

results were mixed. "

I said thank-you very much and he asked me if I had had any synovial

fluid drawn and tested for presence of bacteria and i said no and he

said if I would like he would treat me down there with a referral form

VA Hospital in West Haven , CT . I thanked him again but it was too far

to commute and i didn't have any place to say..End of conversation..I

remember this today because he was one of the nicest and most important

people I'd ever spoken with..He was very 'down to earth' and couldn't

have been more polite..

Today he only practices at VA Phila as Head of the Rheumatology Dept..He

recently gave up similar position at U of Penn Medical Center in Phila.

I imagine he is probably well into his seventies and winding down a

little..

I'm familiar with the Minocycline Proocol too and it is very expensive

at least for me..Six months of a tetracycline derivative without proof

of efficacy or that it can cause Rremission...I'm 65 now and have tried

virtually everything within reason (during last 25 yrs) and finally I'm

very happy with results of my present medicines which work very well

together and since they come from VA, all are approved for dealing with

inflammatory Arthritis..

Just one caveat, . I spoke with Dr Schumacher in Spring of

2001..If you know of any recent studies by him on subject of antibiotics

i would be eager to read them.

Kind regards, Jeff Lanneau

[Guest guest]

Jeff: Look up Dr. Vasey. He is at the University of Tampa. He is my

Rheumatogogist.

Jeff Lanneau <jlanneau@...> wrote:

>

> Well I'm in remission! , if you want experts please read Dr.

Ralph Shumacher's work with Rieters patients. " Ralph Schumacher " was

voted one of the top Doc's in the country!

--------------------

[Guest guest]

i dont think there are too many doctors who are worried about being out of work

if they cured us of our diseases. firstly there will be no overnight discoveries

where all of a sudden everyone is ok.

second, i really dont believe any doctor would ever consider not curing a

patient simply because of his or her own financial interests.

doctors are the experts and for any of us to be giving out advice to someone

when we're not qualified is just plain wrong.

warmest regards ~ james

<ccsdad116@...> wrote: Well

I'm in remission! , if you want experts please read Dr. Ralph Shumacher's

work with Rieters patients. " Ralph Schumacher " was voted one of the top Doc's in

the country! Read of " Dr. Vase'ys " studies at The University of Tampa

where he has put people in remission with a combination of Antibiotics. I'm one

of them! Read of " Dr. Franco " in California who is the foremost expert on Gulf

War Syndrome as well as Reiter's and RA and Lupus. Several months ago I lost a

dear friend to RA who was on these wonderful disease modifying drugs. You can't

knock down the immune system without suffering horrible side effects. She died

of Cancer which is common with these DMARD drugs. It's time for this thing to be

turned right side up! I promise you this disease has been found to be caused by

several different infections and until we get these folks all looking in that

direction we will be spinning in

circles. Let's put our faith in God and our own common sense. If our

Arthritis was cured tomorrow there would be plenty of folks out of work. No

more canes! Less use of Advil , Heating Pads no more! No more Rheumi visits!

People would be spending their time doing what God wanted for them to do and

spending their money and time much more productively. We have the best " Critical

Care " in the world but when it comes to searching for cures and

prevention......When is the last on you have seen something cured? As a child I

spent my summers collecting for Jerry to help cure MD. Do you know how

many billions of dollars have ben spent! How about Ulcers? Ask the average Doc

and he will put you on Tagamet when he should be curing you with the appropriate

Antibiotics.

God Bless You all!!!

God Bless!

---------------------------------

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[Guest guest]

Jeff:

Sorry about that post! I accidentally hit the send button and wasn't even

finished with anything I wanted to say or spell check. Check out Dr. Vasey in

Tampa (USF) He is my doctor. He did a study on Doxy along with Ripfampin and has

put quite a few people into remission (Me Included). The last study I saw

Schumacher do was actually finding a number of bacteria in the joints

(connective tissue) in arthritic patients primarily Chlamydia using PCR testing.

I can look em up for ya. Wow! I thought people would be glad when someone is

healed! This is crazy! I'm glad you seem to take interest in something else that

might help. I sure feel great now!!!

God Bless!

B.

Jeff Lanneau <jlanneau@...> wrote:

>

> Well I'm in remission! , if you want experts please read Dr.

Ralph Shumacher's work with Rieters patients. " Ralph Schumacher " was

voted one of the top Doc's in the country!

--------------------

[Guest guest]

i agree with dave. i would rather allow someone to express their views and we

can choose to accept or discount them on our own. however the only problem with

that is that some people may actually accept advice that is not well founded and

find themselves in trouble. but thats where personal responsibility for what you

do comes into play.

james

dewi@... wrote: wrote:

Fr. Dave: As moderator, shouldn't you be stepping in here? The above amounts

to scaremongering. I also think we should leave God out of it. (NZ is a less

religious country than the US!)

Actually , a discussion like this is healthy but I would ask to use

a better choice of words. As a major list for Reiter's, Ankylosing Spondylitis,

etc., we have to listen to other views, even if we really do not like them.

---------------------------------

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[Guest guest]

Jeff.....

I wanted to ask you, what meds are you on that are working for you?

I am young and have only really been experiencing Reiters symptoms as

my dominant pain source for about 1.5 years (out of 4 since I first

developed an apparent bout of Epididymitis which did not respond to

antibitiocs, spiraled into Chronic Pelvic Pain, and then expanded

outward to create symptoms which spookily match the Reiter's

diagnostic list, although I am HLA-B27 negative and to date i have had

100% clear test results aside from scar tissue & lesions in my pelvis

along my pain of worst fixed-point pain)......but I have a baby son &

would very much like to have more children. Obviously my

triple-sourced chronic pain is a real barrier to doing this in a

fashion that I can be satisfied with -- no less proud of -- so I'm

looking everywhere I can for options to improve my quality of life. I

have a lot of it that I'd like to continue to live, and not as an

invalid although my flare-ups of the past nine months have been so

severe that it's put a lot of doubts in my heart & mind.

In any case, if you felt like sharing the details of the medications

that you gave such a positive report about in your earlier post to the

list, I know I'd be very grateful!

The same goes for anyone else who'd like to throw their two cents in.

I'm all ears, as it were.

- Meader

*******

4-year sufferer, Severe Chronic Pelvic Pain & Reiter-like Severe Arthritis.

Current medications: 80mg Oxycontin 3x per day, Oxycodone 5mg for

breakthrough, Occasional Flexeril & Soma for muscle spasms/back

crises; Lidocaine patches, Various medications for frequent nausea

problems which have proven difficult to diagnose or prevent.

[Guest guest]

HI ,

Thanks for sharing all your info. Because of the

rarity of this disease I'm always looking at different

options and opinions that I can bring back to my MD.

He currently has me on Remicade after I refused MXT.

It has worked wonders but I know that it probably

isn't a cure. I will ask him about trying

antibiotics.

Anytype of success stories of people getting put in

remission is what I want to hear. I know that each

individual is different, but the more we know the

better.

Mpls

[Guest guest]

Jeff: Your post touched me because epididymitis is how my Reiters seemed to

start. I also know how depressing this illness can be. This might sound horrible

but many times I thought of ending it all but I could never do that because of

my faith and my love for my wonderful wife and daughter. I am a Christian. I

remember how very annoying to hurt down there with the epididymitis!

I actually woke up in the middle of the night 13 years ago with pain in

every joint in my body. I thought I had Cancer of the bone. I also remember a

weird rash on my back and down my legs. It was the worst time of my life. At the

time I was a UPS man and ran my butt off everyday delivering packages. But I

had never had this kind of pain. I was taking about " 12 " 200 mg of Advil a day.

It took the edge off but when it wore off the swelling and pain was horrible. I

developed what is called " Sausage digits " . It is when your hands and toes swell

and look like Sausage. At night I would come home and eat and then lay spread

eagle on the floor until it was time to go to work in the morning. I was sad and

I felt alone. I was so scared about having any kind of future. How could I keep

working? I was newly married to the most wonderful woman I could possibly have.

What kind of husband could I be? Dr. Vasy told me that a symptom of Reiters is

" Fibrosis " of the ligaments and

tendons. He is my Rheumatologist. He says that when you have inflammation in an

area for a while it causes the area involved to not stretch as it normally would

because of scar tissue that can develop. Some men with Reiters even develop

" Peyronies disease " or other problems of the hand as well as " Plantar Faciitis.

He says it is the body's way of walling off infection. Anyway, I am in remission

after 13 years of hell thanks to this man and it feels good.

Remember you do what you do or your doctors says. But what I did was tried

things and journal the results. In my case I found a diet of fresh vegetables,

no sugar, no white bread, no salt, no dairy, fresh fruit, lean white meats and

fish seemed to give me more energy and cut some of the inflammation. But the

real relief came after 3 months on the Doxy with Ripfampin. I also take Neprinol

enzymes, Vitamin E, C, Nicinamide, Selenium, Hyaluronic Acid and MSM. I meditate

on positive things that I want in my life and I pray to God thanks for His

healing. Sorry if it offends anyone but I won't apologize for loving Jesus.

Jeff, I'm not telling anyone to get off their " experts " protocol. But, I have

ran the gamut of muscle relaxers that made me want to sleep all day to NSAIDS

that damaged my liver to " Methotrexate that put my white cell count down so low

I almost died. " I might not be cured but I am in remission and I feel

great. I have hope and plans for the future. I am

happy again! Remember doctors are not God! They are just men. You can study

from the same journals they do J(AMA, Rheum Toaday, ex) and know what they know.

In fact you can know more! Because they tend to get stuck in what they learn in

school and seldom have the time to advance their education with their heavy case

loads. The study centers at schools reseach our disease were the way for me. I'm

sorry if my not sticking to standard protocol angers anyone it is not intended.

This disease is horrible enough to face.

God Bless

[Guest guest]

sorry for jumping on the negative bandwagon here jason, but at this time there

is no cure for these diseases. there is only treatment. how we react to that

treatment will be different from one case to another.

different options and therapies are available to all of us. some have tried

them, some havent. soem might work, others might not.

Suchecki <j_suchecki@...> wrote: HI

,

Thanks for sharing all your info. Because of the

rarity of this disease I'm always looking at different

options and opinions that I can bring back to my MD.

He currently has me on Remicade after I refused MXT.

It has worked wonders but I know that it probably

isn't a cure. I will ask him about trying

antibiotics.

Anytype of success stories of people getting put in

remission is what I want to hear. I know that each

individual is different, but the more we know the

better.

Mpls

---------------------------------

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[Guest guest]

,

I ran into this kind of reaction when I posted something about antibiotics and

diet. I don't know if it's a cure or not, but it's the only thing that ever put

me into remission. . I don't know what the point is of having a forum like this

if we can't talk about what has worked for us without being slammed.

McKinney

Wow! I thought people would be glad when someone is healed! This is crazy! I'm

glad you seem to take interest in something else that might help. I sure feel

great now!!!

---------------------------------

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[Guest guest]

, I was a patient of Dr. Vasey quite a few years ago when he was

working on a very large study of the HLA B-27 genetic factor surrounding

Ankylosing

Spondilitis. He was interested in my family history of AS and called me

personally to try to get blood examples from my brothers and sisters to enter

into the data research. He is a well known Rheumatologist and has many

abstracts

concerning the spondy diseases. He does treat Reiter's syndrome with

antibiotics. I believe he uses antibiotics regularly in treating Chlamydia

induced

Reiter's syndrome. Antibiotics are more effective in early disease. It is

given for 6 months. He also has many patients on the anti-TNF drugs, like

Remicade and Enbrel. The following study was done in 2003, using doxycycline

and

rifampin and did not include people with inflammatory bowel disease, psoriasis,

ankylosing spondylitis or preceding dysentery. Not all Reiter's syndrome is

triggered by chlamydia, although most are. It was treated before with just the

doxycycline and was not too effective except with very early treatment after

exposure. Reiters' is triggered by other germs, virus, etc. and antibiotics

have not been successful with other germs. Lyme disease, which has been

mentioned, can also be treated successfully if given soon enough...before

chronic

arthritis sets in. The study, by Vasey, was done on people who had

symptoms...up to 10 years and was done with 30 patients. It proved to be more

successful... by adding the Rifampin. There needs to be more studies done.

_http://www.jrheum.com/abstracts/abstracts04/1973.html_

(http://www.jrheum.com/abstracts/abstracts04/1973.html)

That said, here is another interesting article concerning the TNF Drugs and

what Dr. Vasey says about their use. It is long, but is well worth the reading

for any of us with a Spondy. This group consists of other well known

Rheumatologists...including Dr. Vasey. I was on one of the anti-TNF drugs,

Humira

for two years...and had good results in the beginning. In fact, even off the

drug for a year, I believe it has lessoned by symptoms from the period before

I went on the drug. I suppose I am a little concerned for its long term use.

I will watch for the abstracts over time and I may go back on one of them if

my symptoms get worse. I'm taking Indocin and vicodin for pain. My stiffness

and immobility isn't too bad right now. I have IBD and that gives me more

problems. I've not had Iritis for years. I do think the Humira had helped that

problem...as well as the vitrectomy. My glaucoma is under control with the

Ahmed implant. I have not lost anymore vision. I do have a cataract in my

" good "

eye and have putoff the operation until it hampers my vision for driving.

I'm worried that it may cause iritis to flareup in my only good eye. Choices

we have to make! ugh.

_http://64.233.161.104/search?q=cache:O_96lheKyBAJ:www.fda.gov/ohrms/dockets/A

C/03/transcripts/3967T2.pdf+Dr.+Vasey+spondyloarthropathy & hl=en & gl=us & ct=clnk &

cd=2 & ie=UTF-8_

(http://64.233.161.104/search?q=cache:O_96lheKyBAJ:www.fda.gov/ohrms/dockets/AC/\

03/transcripts/3967T2.pdf+Dr.+Vasey+spondyloarthropathy & hl=en

& gl=us & ct=clnk & cd=2 & ie=UTF-8)

(http://64.233.161.104/search?q=cache:O_96lheKyBAJ:www.fda.gov/ohrms/dockets/AC/\

03/transcripts/3967T2.pdf+Dr.+Vasey+spondyloa

rthropathy & hl=en & gl=us & ct=clnk & cd=2 & ie=UTF-8)

I'm happy you have had such good results, . Many in our group, dealing

with Reiter's, have had the course of anti-biotics and have not had the

success you did. We do what we can with any new information. I personally, am a

little weary of some of the alternative remedies, because many of them only

line the pockets of people who would take advantage of us and do nothing for

our disease. In the end, if we really have problems, I believe we will turn to

the right treatments. I rely fully on information from medical sources. That

is a personal choice. There is still no cure for Reiter's or other spondy

diseases. I have great hope in cell research to change many diseases and create

a real cure.

Best regards, Connie

[Guest guest]

:

Just curious to know if you tested positive for any bacterial or

viral infection?

I too had a bad case of epididmyitis along w/ other symptoms about 4

years ago.. followed by h. pylori....and then all my other symptoms

detailed below kicked in. I've been OVER tested for all STDs

(including Chlamydia many times swab tests and urine culture). I

never tested positive for any STD. I'd love to know what the heck

triggered my pain / symptoms.

RISG Board:

1) Any Male w/ Reiter's have to deal w/ a condition call " balanitis

circumante " ? (Again, another symptom my Dr's refuse to pay any

attention to). Also, I have a really bad of bronchitis. Is this

connected to RS?

2) Does any one (M / F) know the odds / frequency of transmitting

the disease / infection to their significant other? I realize RS

is not " transmitable " .. but the bacteria which caused RS is. So,

how common or uncommon is it for husband/wife ...

boyfriend/girlfriend... whatever/whatever to both have Chronic

Reiter's Syndrome. I've read having Chronic is relatively rare.

So - if a husband and wife both have Chronic RS, that would be quite

unusual. I would also suspect the condition which triggered the

RS .... was not properly eradicated.

Lastly, I was feeling a bit better than normal and decided to do a

little boxing. I put the gloves on and started hitting the heavy

bag at 230PM this afternoon ... it's 940PM and my hands are very

puffy. Not at the knuckles..but the entire hand. Very strange as

I did not hit the bag that long.. .10 mins. My heels are also in

pain. I can't take this BS anymore. I'm 41 and want to live a

normal life.

Thanks again to all.

[Guest guest]

Get tested for Mycoplasmas. Go to Dr. Franco's Websight. He seems to know what

he's talking about. http://www.thearthritiscenter.com/ Hope it helps.... I

know how ya feel I have been there....

joeyjoey1231232002 <joeyjoey1231232002@...> wrote:

:

Just curious to know if you tested positive for any bacterial or

viral infection?

[Guest guest]

Thank you Granny, but I'm not out of the woods. It could come back. But for now

I'm really feeling great and I'll take it. Thanks for the info....

God Bless

[Guest guest]

and other new members,

There are two web sites that are very good in describing Reiter's and other

spondy diseases.

The web page below...is for those with Reiter's syndrome. If you click on

the " about spondylitis " it covers the other spondy related diseases.

_http://www.spondylitis.org/about/reactive.aspx_

(http://www.spondylitis.org/about/reactive.aspx)

Another very good site is the National Ankylosing spondylitis Society of UK.

This site is mostly for AS, but does have a lot of good information for

people with any type of Spondy disease. It has a page with exercises we should

do, etc:

_http://www.nass.co.uk/_ (http://www.nass.co.uk/)

These pages will answer you question on the triggers for Spondy and a lot of

information for those who are new to the disease.

Best regards, Connie (granny)

[Guest guest]

Kev:

Thanks. I'm going to see how things go at the NY HSS before flying out to

CA. I've finally got an appt w/ a top doctor there. It's taken just over a

year to see this one doctor. I appreciate the info / help.

We'll see ...

Thanks again.

[Guest guest]

Granny:

Thanks for your story / info. Can you tell me where I can read more about

the other triggers you mentioned. I may seek Dr. Vasey consultation depending

on how things go this week w/ a NY-based Rheumie.

All the best.

[Guest guest]

Granny:

Thanks. I entered the first site and noticed my symptoms matched

ReA (100%!!!). Plus the fact that all my blood tests (i.e. ANA)

are normal more evidence of Reiter's Syndrome. Could it be that

three top rheumatologists missed this??

Truely hard to believe.

Thanks.

[Guest guest]

said:

I wanted to ask you, what meds are you on that are working for you?

4-year sufferer, Severe Chronic Pelvic Pain & Reiter-like Severe

Arthritis.

> Current medications: 80mg Oxycontin 3x per day, Oxycodone 5mg for

> breakthrough, Occasional Flexeril & Soma for muscle spasms/back

> crises; Lidocaine patches, Various medications for frequent nausea

problems which have proven difficult to diagnose or prevent

----------

,

I'm going to say something which bears repeating on a regular

basis....mainly because it's full of truth:'What works for me may

not necessarily work for you'..To start, I fall into that small

percentage of Reiter's patients who are Chronic ..I've seen

statistics and surveys and most fix the incidence of long term

Reiter's at about 5% - 20%...Therefore I reached the point some

years ago where I pretty much 'threw some caution to the wind'

So keeping in mind that I had symptoms for about 20yrs before i was

finally diagnosed at HSS in NYC, I'm tremendously lucky in

retrospect...HSS

was pretty much my last chance..So when my Rheumatologist offered

Methotrexate, I took it..When he recommended Asulfadine took that

too..He also recommended swimming several days a week at a nearby

heated pool..THat was '95, ..Like you i had a preceeding

Urinary tract Infection of some sort which almost always was neg for

all cultures....I'd also had my share of conjunctivitis and

blepheritis...again neg cultures and finally i had sacroilitis...

To deal with all these problems I joined the West Haven VA

Healthcare System and i owe a friend who steered me there a lot..It

really helps to have all doctors and clinics under one roof..All

told from '95 onward i was blessed in many ways. I'm too old for

regrets, so I harbor very few..I spent the better part of the last 6

or 7 years working with my doctors to achieve some normalcy in my

life..Lots of trial and error, which is why i say what works for me

may not work for you..

Here goes with the meds.I also developed FMS(fibromyalgia) along

with RS(Reiter's Syndrome) and some AS (Ankylosing Spondylitis..The

main complaint is from RS..

From Rheumatology clinic I receive methotrexate,Sulfasalazine,elavil

for deep muscle pain and 3yrs of Enbrel which works well for me, esp

now that i'm using the pre-filled 50mg syringes..One per week..I get

a months supply in a tiny little box just containing 4 of the

syringes..Vast improvement over the 2/25mg not pre-mixed /twice a

week..

From Urology i get gatifloxasin (Tequin) when burning becaomes tough

to handle..I also get hytrin (terazosen) for relazation of all

inflamed tissues in and aroung Pelvis; but esp perineum, which is

where the prostatitis migrated to.

From Pain clinic I get somethiong

really special: Neurontin (gabapentin) 800mg/day. As well as

Darvon.

Something which was designed to relieve anxiety, Ativan, but

also helps relax all those areas where inflammation has worked it's

will including my mental health.I also receive Zoloft (sertraline)

for your average depression..Thing is, it also helps relieve a lot

of aches and soreness throughout my body...And if any one were to

ask how i knew each individual benefit, i did it the hard way..I ran

out at one point of every med i use..(Not for long but it only takes

a few days to notice the pain and soreness creeping back in...

That's prety much it except for occassional tylenol, ibuprophen

Vitamin D to help with Anemia and Folic Acid to reduce the side-

effects of Methotrexate and Sulfasalazine......

.

jeff lanneau