Sulfasalazine

[Guest guest]

Hi , been taking 1500 mg sulfasalazine for six months without

any problem recently. When I started out, it was with 500mg. for one

week, 1000mg. second week and 1500mg. third week to date. From the

first dose to about the fourth week or so, I had a general feeling of

" Blah " , dry eyes, some feelings of my skin stretching on the face, and

some mild nausea with bowel " distress " . This continued with each dose

increase, but did level out and now I don't seem to have any problem

with it -there seems to be so many other quirks associated with this

PA business that I do lose track of what's what . Take care,Lorraine

[Guest guest]

I guess I'll just have to get used to some weird stuff for awhile. Thank

God I work in a mental health centre... I get a good trade off there... they

give advice and I bring my muscle massager!!! lol

[ ] re: sulfasalazine

Hi , been taking 1500 mg sulfasalazine for six months without

any problem recently. When I started out, it was with 500mg. for one

week, 1000mg. second week and 1500mg. third week to date. From the

first dose to about the fourth week or so, I had a general feeling of

" Blah " , dry eyes, some feelings of my skin stretching on the face, and

some mild nausea with bowel " distress " . This continued with each dose

increase, but did level out and now I don't seem to have any problem

with it -there seems to be so many other quirks associated with this

PA business that I do lose track of what's what . Take care,Lorraine

[Guest guest]

yes i'm taking this too...you have to keep an eye on your liver counts.....let me know how it works for you...i've been on it 1 week so far....i really don't want to go to the injectables next.....i hope it works for us...good luck and have hope MTNCAT

[Guest guest]

,

Hi. I am new to the list.

I am on Azulfidine, which is Sulfasalazine. I have to have blood work

done monthly to check my liver and kidneys. I am almost positive that

is what it is for.

> When I was prescribed this a couple of weeks ago, I was told that I

would

> need to have blood tests periodically. Problem is, I forget what

for. Does

> anyone here know what exactly is being tested? Please and thanks.

>

>

[Guest guest]

> When I was prescribed this a couple of weeks ago, I was told that I

would

> need to have blood tests periodically. Problem is, I forget what

for. Does

> anyone here know what exactly is being tested? Please and thanks.

>

>

Hi , I take 1500mg. sulfasalazine and was told by my rheumy, &

family doctor that I didn't need tests as this was pretty safe.

However everything I've read seems to point to some testing (not sure

of interval, but less often than MTX). So I insisted on having one

done about three months into treatment and will soon ask for another.

I think they check for liver function, CBC, sed rate, and possibly

more. Hope this helps, Have a good one! Lorraine

[Guest guest]

Yes, I concur. I've taken 1500 mg sulfasalazine plus 1500 mg Relafen

or other NSAID for about ten years or so and my rheumies (I've gone

thru three of them) usually would run blood tests every 3 to 6

months. Recently cut back on sulfasalazine to 1000 mg/day and went on

MTX, so now I get blood tests every month because of the MTX.

-- Ron

> Hi , I take 1500mg. sulfasalazine and was told by my

> rheumy, & family doctor that I didn't need tests as this was

> pretty safe. However everything I've read seems to point to some

> testing (not sure of interval, but less often than MTX). So I

> insisted on having one done about three months into treatment

> and will soon ask for another. I think they check for liver

> function, CBC, sed rate, and possibly more. Hope this helps,

> Have a good one! Lorraine

[Guest guest]

In a message dated 5/5/01 6:32:45 AM US Eastern Standard Time,

heather.watson@... writes:

<< know what exactly is being tested? Please and thanks.

>>

- not sure about sulfasalazine, but for MTX it's liver enzymes.

Probably for the sulf. too - these drugs can damage your liver so you must be

monitored

[Guest guest]

I took Sulfasalizine for about 2 years until my liver enzymes showed a

problem. After a liver biopsy, I was diagnosed with Cirrhosis. Take those

blood tests seriously. I was never told that cirrhosis was a possibility

until it was too late.

Allayne

[ ] Sulfasalazine

> When I was prescribed this a couple of weeks ago, I was told that I would

> need to have blood tests periodically. Problem is, I forget what for.

Does

> anyone here know what exactly is being tested? Please and thanks.

>

>

>

>

>

>

[Guest guest]

Hi - I was on sulfasalazine for several years, and did rather

well for a while, though not nearly as well as I am now on antibiotic

treatment. I remember my doctor telling me that a possible side

effect of sulfasalazine is a dangerous decrease in white blood cell

count, and that's why periodic blood tests are necessary. I had no

problem, and apparently if that's going to happen , it's likely to

show up within a year or so. It took about six months before I began

to see real improvement on sulfasalazine, and I continued to improve

gradually for another year or so, until I really was in pretty good

shape. After about 4 years, it seemed to be gradually losing its

effect for me.

Best regards, Greenly

[Guest guest]

Hi , I found that sulfasalazine had an incredible effect on

drying everything (and I mean EVERYTHING) up. I was already taking

Celebrex (400mg), Desyrel (50-75mg), flexeril (as needed), before

adding the sulfasalazine. I can tell you that for me, all the others

produced some dryness in mouth, eyes, vag, and everwhere else. But oh

boy, did the sulfasalazine do the job! The eyes are starting to come

back, but in the mean time, I had to use a tear solution to lubricate

them when needed. The mouth thing I can live with. However, the vag

dryness is still troublesome. No yeast infection for me, but the

urine seems stronger and seems to produce a burn/itch combo that is

similar to the yeast thing - sorry to be so graphic for all you

non-vag persons in the crowd:). Anyway, that's what I've found with

the 1500mg, so I bet 2000mg. is more so. Take care, Lorraine

[Guest guest]

Oh bliss, oh joy!

[ ] re: sulfasalazine

Hi , I found that sulfasalazine had an incredible effect on

drying everything (and I mean EVERYTHING) up. I was already taking

Celebrex (400mg), Desyrel (50-75mg), flexeril (as needed), before

adding the sulfasalazine. I can tell you that for me, all the others

produced some dryness in mouth, eyes, vag, and everwhere else. But oh

boy, did the sulfasalazine do the job! The eyes are starting to come

back, but in the mean time, I had to use a tear solution to lubricate

them when needed. The mouth thing I can live with. However, the vag

dryness is still troublesome. No yeast infection for me, but the

urine seems stronger and seems to produce a burn/itch combo that is

similar to the yeast thing - sorry to be so graphic for all you

non-vag persons in the crowd:). Anyway, that's what I've found with

the 1500mg, so I bet 2000mg. is more so. Take care, Lorraine

[Guest guest]

,

I'm glad to hear you had just great results w/this drug. It caused me

mouth sores. I have that " cotton mouth " most of the time and that just

made it really bad.

Nanc

jbgreenly@... wrote:

> Hi- There have been questions from Joe and Iris about sulfasalazine.

> It has been used for decades for colitis and other chronic problems,

> and it was discovered that it sometimes works very well for arthritis

> too. Nobody knows why

[Guest guest]

Hello Dan

Thanks for the response!

I take 2 tablets of Sulfasalazine 500mg ea in the morning and 2 in the

evening.

The Vioxx are 25mg and I take one of those in the morning.

Regards, Ken N

[ ] Re: Hello, and a question about insurance

Ken,

>From what my doctor told me, Naproxen is very similar to Vioxx. In

fact I intially asked if I could get Vioxx because my general

practioner doctor gave it to me for the swollen knee (back when I

thought I had sprained it). And the Vioxx brought the swelling down.

So when I got to my rhematologist I asked him about it, and he said

Vioxx and Naproxen are very similar, with a couple of differences:

1. Vioxx is new and may not have been covered by my insuarnce

company. Apparently Naproxen has been around and insurance companies

don't ask any questions because it is pretty common. This is the main

reason he prescribed Naproxen for me instead of Vioxx. I think

Naproxen is probably cheaper too.

2. Vioxx is easier on the stomach. But I have a stomach of steel so

that wasn't a problem for me.

Also another difference is that Vioxx comes in a very, very small

tablet, while Naproxen looks like a drug manufactured in the 60's.

The design is very out of fashion. Looks like a big oval aspirin. But

it works.

Finally, from what I understand Naproxen is nothing much more than a

fancy aspirin. (OK, this last part I got from a vet friend of mine,

but she's very smart. Nevertheless, take that knowing where it came

from!)

Well, that's my info about it. Maybe do a Google search on it and see

what else comes up.

By the way, are you also taking 3 sulfasalazine tablets every 12

hours? I wish they could pack a full dose in one tablet!

Dan.

> Hi Dan,

> Can you tell me more about Naproxen. I'm also taking Sulfasalazine

along

> with Vioxx.

> I've just included my story today for the first time.

>

> Best regards

> Ken N

> Calgary, AB

[Guest guest]

Hi Diane,

I have been on the sulfasalazine for about 2 weeks now

and have had a couple of days of nausea and sinus

headaches too! The weather here in Arkansas is

probably similar to the weather there in Kansas. It

has turned cold finally and with the cold weather, the

dry heat of the central heating system really dries my

sinuses out...but I have been wondering if the

headaches weren't from the sulfasalazine since that

was listed as one of the possible side effects along

with the nausea. Neither have been unbearable though

and I think I am actually better as far as joints are

concerned. Hope you get to feeling better too!

Sharon

[Guest guest]

I was on Sulfasalazine for about 4 months. It took quite awhile to feel

like I was getting results. I don't know maybe 2 mos. But I was very

naseaus the whole time. I was " sick at least 3 nights a week. It would

just hit out of the blue. And I'd be in the bathroom hugging the toilet for

an hour! It did seem to put my arthritis in check and actually cleared

my psoriasis about the 3rd month. I had to opt to go off of it though

because the nauseasness was too much for me with the kids. So far, so good

though. Oliver

[Guest guest]

Dear ....It seems to be standard practice to put a newly diagnosed person

with PA on Sulfasalazine with either Viox or Celebrex. The V or C is for pain

and inflammation. Mostly for pain. The S is to try to control the disease. In

my case all the S did was turn my urine a wonderful shade of orange. You must

remember to drink a lot of water when on S. At least double what you would

normally drink thirsty or not. Not doing this (especially in dry weather) could

be the cause of your headaches. Also, it reduces the chance of liver and kidney

damage. Personally the S didn't help me much. Generally the next drug they

will try is MTX if the S doesn't help. My advice is to skip them all if you

have advancing PA and try Enbrel before you have joint damage in the sausaging

digits. It's the only thing that worked on me. If I would have started Enbrel

sooner I would have skipped much suffering and joint damage. PA can and does

progress very rapidly in some of us. R.E.

[Guest guest]

I don't know how many other people here with PA have the 2 MAJOR

complications I do, but I am allergic to sulfa drugs (celebrex and

sulfasalzine) and now Plaquenil AND I can not take any NSAIDs (vioxx

included). I get severe stomach pains (GERD) from them.

So whatever the " standard " is for PA (since it's not very common),

none of it works for me. I'm on MTX now which vaguely helps. Gonna be

going on Enbrel soon (fingers crossed).

So my treatment options have been somewhat limited.

[Guest guest]

In a message dated 12/28/2001 10:59:58 AM Eastern Standard Time,

meghan@... writes:

> but I am allergic to sulfa drugs (celebrex and

> sulfasalzine) and now Plaquenil AND I can not take any NSAIDs

Same here - ask your rheumy about Vioxx - it's just like the celebrex but no

sulfa. The MTX killed my stomach so I injected but I got elevated liver

studies. I'm on vioxx and Enbrel now - doing well - not much pain and more

energy.

Good luck,

[Guest guest]

Hi -- Sorry to be so slow in responding -- we've been out of power for

about a week, and just got it back last night. I took Sulfasalazine for a very

short time, but both my doctors (family and rheumy) took me off it quickly when

I reported extreme headaches starting in the bone below my right ear. Since then

I've been on Naprosyn, and now

over-the-counter naproxen sodium. -- Jan O', Alaska

[Guest guest]

Hi Ella,

Thanks for the info and the encouragement. I was told to expect that

it may take up to 6 weeks to feel any effect from the sulfasalazine

(it's only been a week and a half so far and I've not yet noticed any

positive effects). I currently have almost the same problem you

described (among others)- PA in two toes on my right foot, extending

to the bottom of the foot that makes walking difficult. It's great

to hear that this problem has improved so much for you with

sulfasalazine! It would be so nice to walk without pain again!!

My first week taking the sulfasalazine I took 2 tablets of 500mg each

with no problem. This week I was supposed to up the dosage to 1500mg

and next week to 2000mg. This gradual increase is supposed to

minimize any side effects. However, after two days on 1500mg I got

the worst headache! So I've been told to go back down to 1000 mg for

another week and try again to increase it next week.

Also, I read from two different sources yesterday that this drug can

cause bad breath or a weird smell. Has this been your experience (or

anyone else's)? I hope it's a rare side effect!

Thanks again!

Sharon

[Moderator's note: Hi Sharon. I've been taking 1500 mg Sulfasalazine daily for

many years and have never noticed (or received any comments about) either

problem you mention with it creating bad breath or a weird smell. On the other

hand, my wife lost her sense of smell several years ago as the result of surgery

to open up her nasal passages, and I smoke a pipe. Still though, I'd think that

my rheumatologist would mention any such effects even if my friends and

co-workers don't. When Sulfur oxidizes it produces sulfur-dioxide, which if I

recall from my childhood days of producing " Stink-Bombs " is the classic

" Rotten-Egg " smell, so perhaps that is where the smell (if any) comes from. The

only effect I've ever noticed is brightly yellow colored urine. Perhaps you

should start smoking cigars or a pipe if you're concerned about bad breath - no

one would notice! (Just kidding ;-) Ron]

> I have been taking sulfasalazine for about six months, and I've

noticed a huge

> improvement in my PA. I have PA in my left foot, my 4th toe and

pinkie toe

> mostly, and to an extent in the bottom of my foot. I was having

quite a bit of

> pain from walking, and I would even need to worry about where we

parked if we

> were going out to eat or something. Now, I can walk for at least a

mile and I

> don't feel so limited in that way. I'd say there is at least a 50%

improvement

> since I started taking the sulfasalazine. I'm currently taking

1000 mg twice a

> day. I started taking Vioxx at the same time (I was taking

indocin) so some of

> the improvement may be from that. I do still have some swelling

and pain, but

> not nearly to that extent.

> _______________________________________________________________

>

> >for RA but not PA.

> >- I'd also be interested in hearing from anyone who has tried

> >Susfasalazine for PA and found it to be very effective.

> >-Finally, is there Anyone in Vancouver, Canada who knows a

> >rheumatologist that specializes in PA?

> >

> >Sorry this is a bit long. Thanks for listening!

> >

> >Sharon

[Guest guest]

Hi Ron,

Thanks for the comments. That makes sense (about the sulfur smell -

not the pipe ;-) . Hopefully it's a rare side effect!

Sharon

[Moderator's note: Oh shucks Sharon... I was hoping to have a new convert to the

pleasures of pipe smoking. ;-) Did you know that lots of famous women throughout

history smoked both pipes and cigars? Ron]

>

>

> [Moderator's note: Hi Sharon. I've been taking 1500 mg

Sulfasalazine daily for many years and have never noticed (or

received any comments about) either problem you mention with it

creating bad breath or a weird smell. On the other hand, my wife lost

her sense of smell several years ago as the result of surgery to open

up her nasal passages, and I smoke a pipe. Still though, I'd think

that my rheumatologist would mention any such effects even if my

friends and co-workers don't. When Sulfur oxidizes it produces sulfur-

dioxide, which if I recall from my childhood days of producing " Stink-

Bombs " is the classic " Rotten-Egg " smell, so perhaps that is where

the smell (if any) comes from. The only effect I've ever noticed is

brightly yellow colored urine. Perhaps you should start smoking

cigars or a pipe if you're concerned about bad breath - no one would

notice! (Just kidding ;-) Ron]

>

>

>

> > I have been taking sulfasalazine for about six months, and I've

> noticed a huge

> > improvement in my PA. I have PA in my left foot, my 4th toe and

> pinkie toe

> > mostly, and to an extent in the bottom of my foot. I was having

> quite a bit of

> > pain from walking, and I would even need to worry about where we

> parked if we

> > were going out to eat or something. Now, I can walk for at least

a

> mile and I

> > don't feel so limited in that way. I'd say there is at least a

50%

> improvement

> > since I started taking the sulfasalazine. I'm currently taking

> 1000 mg twice a

> > day. I started taking Vioxx at the same time (I was taking

> indocin) so some of

> > the improvement may be from that. I do still have some swelling

> and pain, but

> > not nearly to that extent.

> > _______________________________________________________________

> >

> > >for RA but not PA.

> > >- I'd also be interested in hearing from anyone who has tried

> > >Susfasalazine for PA and found it to be very effective.

> > >-Finally, is there Anyone in Vancouver, Canada who knows a

> > >rheumatologist that specializes in PA?

> > >

> > >Sorry this is a bit long. Thanks for listening!

> > >

> > >Sharon

[Guest guest]

The only woman I'm aware of that smokes a pipe is my ex-mother-in-

law -- not really a pretty sight! ;-)

>

> [Moderator's note: Oh shucks Sharon... I was hoping to have a new

convert to the pleasures of pipe smoking. ;-) Did you know that lots

of famous women throughout history smoked both pipes and cigars? Ron]

> > > I have been taking sulfasalazine for about six months, and I've

> > noticed a huge

> > > improvement in my PA. I have PA in my left foot, my 4th toe

and

> > pinkie toe

> > > mostly, and to an extent in the bottom of my foot. I was

having

> > quite a bit of

> > > pain from walking, and I would even need to worry about where

we

> > parked if we

> > > were going out to eat or something. Now, I can walk for at

least

> a

> > mile and I

> > > don't feel so limited in that way. I'd say there is at least a

> 50%

> > improvement

> > > since I started taking the sulfasalazine. I'm currently taking

> > 1000 mg twice a

> > > day. I started taking Vioxx at the same time (I was taking

> > indocin) so some of

> > > the improvement may be from that. I do still have some

swelling

> > and pain, but

> > > not nearly to that extent.

> > > _______________________________________________________________

> > >

> > > >for RA but not PA.

> > > >- I'd also be interested in hearing from anyone who has tried

> > > >Susfasalazine for PA and found it to be very effective.

> > > >-Finally, is there Anyone in Vancouver, Canada who knows a

> > > >rheumatologist that specializes in PA?

> > > >

> > > >Sorry this is a bit long. Thanks for listening!

> > > >

> > > >Sharon

[Guest guest]

<PRE>Im curious to any Sulfasalazine users...i became nausas and pains in my

stomach from taking it only like 3days, so i stopped it but im wondering if i

should of been more patient for the side affects to go away????

[Moderator's note: You didn't mention what dosage you're on, but it may be that

you're allergic to Sulfur(?) If not, you might try a lower dosage. As always,

check with your doctor. Ron]

[Guest guest]

oops i have to find the bottle but i think a rather low dose

my rheumy upped my mtx dosage though to 17.5 a week and im waiting for it to

start working cause it seems to take a while for an effect to take place.

my doc is thinking of shots next if things dont get better for me cause im

having a major flare up right now and all my joints are stiff.

tell me about your condition if you dont mind

Lissa

[Guest guest]

Hi Amy

Many of us have tried this stuff. It's an old drug that's been around since

dirt.

It either works very well for some or you get what you got or worse. For me

it

was fatigue that I couldn't get used to. PA causes enough of that, don't

need a drug

that makes it worse. From what I read before I quit it.... It works for

about 20% of the

people who try it. I thought it caused depression too but that could have

been a added

bonus of the extra fatigue.

Good luck

Duane

[ ] Sulfasalazine

Has anyone tried sulfasalazine for their PA? I was prescribed it

and tried it for a week and had terrible stomach problems, including

nausea and vomiting, felt dizzy, and had an incredible backache. I

stopped taking the medication and these symptoms cleared up. Has

anyone else ever experienced such side effects with this medication?

Thanks,

Amy