Re: New Drug for my husband's flare.

[Guest guest]

Hi Ann

I have reactive arthritis and am currently on Sulphasalazine and

methotrexate. I have been on Sulphasalazine for 8 of the last 12 years. It

is a good drug, with a good side-effect profile. They like to try it by

itself first and if it is ineffective, or only partially effective, they

will add another drug (usually methotrexate) to it. [ Harnett] Feel

free to email me (wjkh@...) if you would like more information.

P.S: They don't usually prescribe Sulphasalazine to people with a sulfa

allergy!

[Guest guest]

Anne, I had a similiar experience. The anti-inflams

kept things at bay (with pain), but once I went off

them things exploded. Only the pretizone worked for me

to reduce swelling, etc. I've been on the Sulfa for a

week now (hard on the stomach), and my dosage is

increasing weekly ... not because I need it that way,

but that's what was prescribed. I don't know if the

sulfa is really doing anything for me that the

pretizone isn't already covering.

Ideally, I'd be on one or the other so I could

compare, but muddling the two makes it hard for me to

know what the relative effects are.

$0.02

-Sandy

[Guest guest]

Sandy, if at all possible, steroids shouldn't be taken over long term....as

they have serious side effects, but the Sulfasalozine can be taken over very

long periods of time. Maybe your doctor is trying to cut down on the

Prednisone , hoping that the Sulfasalozine can be replaced by it? Prednisone

has

harsher side effects given over the long term and at some point in the

future...you won't be able to get off it because your adrenals won't work

right. All

this depends on the dosages and length of time you've been on steroids.]

Best regards, Connie

[Guest guest]

Hi Sandy

Just a note to say they usually start sulphasazine slowly, building up from

1 pill per day for a week, to 4 (or sometimes 6) pills per day. It reduces

side-effects that way. Also, perservere: I had nausea for nearly a month,

as my body adjusted to the drug. It wore off after that.

Prednisone is used as a temporary fix and has a terrible side-effect

profile, if used too much, but sulphasalazine is a 'disease-modifying' drug.

I've had 2 long remission periods thanks to sulphasalazine (and mtx).

All the best,

[Guest guest]

Yes, you're absolutely correct.

I'm on a declining dosage of prednizone (30mg in first

week, 25 mg in second week, down to 5mg in sixth

week). The sulfa is increasing on a weekly basis.

I'm personally dropping my napro down from 500mg at

night to 275mg as I think I'm feeling a little better

at night.

I started exercising again (a kilometer in the pool

each day) and afterwards I feel fantastic, but in the

morning really tight tendons in the feet/ankles. Takes

till about 4pm for it to loosen up again. I suspect

it's because of going from 60 to 0 in 7 weeks (I used

to train for triathlon before the attack).

Starting to get a little ringing in my ears and still

swelling in my left toes ... which worries me. Not out

of the woods yet. But the drugs are certainly working

.... no real pain anymore.

Great forum here folks ... thx for all the great

feedback.

Sending postive energy!

-Sandy

__________________________________________________

[Guest guest]

It's an anti-inflammatory drug that's been around a long time.

Should be taken w/ food to reduce stomach pain. I tried on an empty

stomach and paid the price. I'm told many board members take it w/o

side effects.

[Guest guest]

Hi Sandy

It sounds as though you have a really positive attitude towards coping with

this disease. Good for you

*Unnecessary amounts of quoted message removed by moderator for poster.

[Guest guest]

Thankyou all for all the great help and information. You are our only support

outside of the brief doctor's visits. My husband has an inflamation of prostate

that won't so away - very persistant bugger. He has been on 60 days of anti

biotics which make him very sick. I was wondering if his prostate inflamation

isn't causing the flare to continue this long. He has been out of work now two

and a half months will be three by end of September. He has always been very

active and athletic so getting weak and fatigued all the time is depressing. I

read the digests every day trying to learn more. I can't thank you enough for

your time and patience. - hang in there the doctors will figure it out,

but sometimes that have to 'try' something to see how your system reacts. I

speak from not experience with reactive arthritis, but I have spondylxxxx of

spine and after my last surgery an abcess formed on the interior of my spine - I

was in excruciating pain 10 but it took

two months and a hint of lawsuit to get them to do an mri of my spine, then it

took two weeks to schedule the ct guided extraction of the fluid, with a note

that it may come back and another 6 weeks to wait for all the pathology reports

to come in before they would treat me for the condition. It was very

discouraging that they are so limited - I think by fear of lawsuit.

[Guest guest]

Phyllis:

Thanks.

I am open to medication. In fact yesterday I started taking

Arthrotec 75 which is a combo of diclofenac and misoprostol.

I'm supposed to take two pill per day. Yesterday I took one pill

and was OK (limited stomach pain). Today was an all out disaster.

My stomach can't handle this stuff. Reflux all day. I will

discuss w/ the doctor who prescribed. She'll ask if I've started

the Methotrexate. Yikes!! I'm still not ready for that.

I can't believe how much this condition has changed my life. From

Mr. Do All / Energy to Mr. Hermit Crab. I am not happy w/ myself

or way of life. Today was a beautiful day in NY. Sunny skies, cool

breaze in the air. Went down to the soccer field w/ my kids.

Stayed out an hour. Came right back home and went to sleep. Nice

dad. A real bundle of joy to be with.

If and when I try the Methotrexate, I'll let you know how it

goes. I may instead go w/ the new experimental drug therapy of

doxy / ripfamin.

Interesting info on your husband's prostate. I am in my early 40s

and doctors found a little bugger called Enterococcs Faecalis in my

semen. They all concurred that I was too young to have prostate

problems. I was treated w/ 90 day of antibiotics. The bugger is

still there. After meeting w/ 3 or 4 urologist (including the

folks down in s Hopkins), I decided to not treat. This bacteria

is resides in the human body (usually intestines). However,

ocassionally it gets where it does not belong. I took ampicillin

and tequin. The tequin was for deep tissue penetration. Oddly

enough the bacteria did / does not show in urine cultures (including

post prostate massage / urine catch). It's very important to find

out what the bacteria is suseptible to. General antibiotics may not

work. My bacteria was suseptible to ampicillin. Another odd

thing. The bug only shows in semen cultures. Another unsolved

mystery. Not sure if any other male members suffer from this. If

so, would love to hear more about it. Especially treatment.

Thanks!

[Guest guest]

,

Although I have never had any bacteria show up in my prostate massage

urine/semen cultures, my ReA/Reiter's is believed to have been

triggered by my preexisting chronic pain condition -- Chronic Pelvic

Pain which was in turn caused by a case of Acute Epidymitis/Orchitis

(testicular/male reproductive " tubing " pain) that became chronic after

I was put on dozens of different anti-b's. None helped.

I have tremendous scarring along my reproductive tract, up the

spermatic cord into my abdomen. That caused more than enough pain to

wreck my life for three years and then this all-over

joint/fascia/muscle/bone pain started last year while my wife was

pregnant with our son (now eight months old, going on 9mos). Luckily

we found a relatively good doctor who does his best to keep my pain

treated -- even though it's not nearly enough & I always feel like

we're two or three steps behind the progression of my pain -- and I've

been seeing him for the past year.

I have learned a LOT about male reproductive problems as I

self-educated and self-treated my CPPS.....hopefully some of that

information might be of some use to you.

First and foremost, I just wanted to let you know that you're far from

alone in having a reproductive issue trigger ReA. In fact I think a

good portion of the multi-year chronic cases in my

Epidydmitis/Prostatitis/Orchitis/CPPS support group have developed, or

are developing, something like Reiter's/Fibromyalga/CMFS just as you

and I have. I think it's a far more common progression of symptoms

than is generally realized.

-