sulfasalazine

[Guest guest]

-

I have never taken sulfasalazine but have been on Plaquenil and

methotrexate for years. Plaquenil doesn't require blood tests just an

eye check at the beginning and then one every 6 months. Methotrexate

requires monthly blood tests. For what it's worth..... Good luck with

whatever you go on - I hope it works for you. It will be wonderful when

all the court stuff is done and you can find how how life is without all

the stress.

Meg

[Guest guest]

Hi,

Just wondering if anyone else is currently taking

this? I've heard of it, but not much and the doctor

from Stanford thinks I should try it... When I asked

how it worked he said they did not know exactly, but

it works in the bowels. When I asked about antibiotic

therapy, he said this is sort of like that....

So, I'm sort of wondering what anyone else knows or

has experienced.

Thanks!

[Guest guest]

My rumy wanted me to take Sulfasalazine with Humira. Unfortunately, it gave me

such headaches...it is like a migraine if anyone has had these...I couldn't take

it.

But, my rumy said it was an antibiotic treatment that worked in conjunction

with another treatment.

Kathy

[Guest guest]

I tried this for two years about 3 years ago. I was

breast feeding my newborn at the time. It is also

used for colitis which is a bowel disorder. Anyhow it

didn't work for me the two years I was on it. I had

horrible side effects in the beginning and when I

stopped taking them. I truly found my rhuemy didn't

listen to my needs or how I felt about these meds.

Anyhow - Just because it didn't work for me doesn't

mean it won't work for you. I would ask how long it

takes for the effects of the meds to be seen. They

told me 3wks - 6 months. They will monitor your liver

counts to make sure your liver is not being hurt by

these meds.

Hope that helps.

Rita

--- <kjreed0929@...> wrote:

> Hi,

>

> Just wondering if anyone else is currently taking

> this? I've heard of it, but not much and the doctor

> from Stanford thinks I should try it... When I

> asked

> how it worked he said they did not know exactly, but

> it works in the bowels. When I asked about

> antibiotic

> therapy, he said this is sort of like that....

>

> So, I'm sort of wondering what anyone else knows or

> has experienced.

>

> Thanks!

>

>

>

>

>

>

__________________________________________________

[Guest guest]

In a message dated 3/3/2006 9:13:56 P.M. Eastern Standard Time,

kjreed0929@... writes:

Just wondering if anyone else is currently taking

this?

Hi ,

I have been taking Sulfasalazine for about 2 years because I cannot take

Methotrexate. I have thought in the past that it wasn't particularly helpful,

but once I stopped taking it and got very stiff so it must be doing something!

About 9 months ago I started taking Enbrel with it...it's been a pretty

good combination for me, getting me about 85% improved. The only thing it

hasn't helped are my sacroiliac (lower back) joints, so I switched last week to

Remicade...it's too soon to know if the sulf/remicade combo will work for me...

I have never sulfasalazine described as similar to antibiotic therapy. I

have always heard that sulfasalazine is a DMARD (disease modifying anti

rheumatic drug) like methotrexate or arava. The magazine Arthritis Today

published

by the Arthritis Foundation does an annual report on the classes of drugs and

how they work...I don't have a copy of it, but I would think you could get a

copy from the Foundation if you want more information...

[Guest guest]

I've never tried it, but it is a well known drug for PA. I've learned about it

from my studies and it seems to be the most prescribed NSAID for PA.

Thanks,

<kjreed0929@...> wrote:

Hi,

Just wondering if anyone else is currently taking

this? I've heard of it, but not much and the doctor

from Stanford thinks I should try it... When I asked

how it worked he said they did not know exactly, but

it works in the bowels. When I asked about antibiotic

therapy, he said this is sort of like that....

So, I'm sort of wondering what anyone else knows or

has experienced.

Thanks!

[Guest guest]

Re: Sulfasalazine

" I have never sulfasalazine described as similar to

antibiotic therapy. I have always heard that

sulfasalazine is a DMARD (disease modifying

antirheumatic drug) like methotrexate or arava. "

Sulfasalazine IS a DMARD like methotrexate or arava,

and not solely used for rheumatic

arthritis/psoriasis/etc, but also for things like

Crohn's and ulcerative colitis. I think people get

confused because it is also a SULFA drug...most

commonly people hear the words " Sulfa drugs " and think

" oh antibiotics. " Yes, Bactrim and Pediazole are a

couple of antibiotics that contain sulfa

(specifically, they contain sulfasoxizole) and are

commonly used, however, other drugs that treat

different conditions are also sulfa-based. Not just

Sulfasalazine either. For example, Silvadene Cream is

a sulfa-based antibiotic cream commonly applied to

burns to help them heal. If you read the Physician

Desk Reference for drugs, it will tell you that the

diuretic Lasix (furosemide) and the NSAID's Celebrex

and Bextra also contain forms of sulfa as well. Any of

these drugs should be used only with extreme caution

(and preferably not at all!) in patients with a

documented Sulfa allergy. (Which is one reason why I

avoid taking them and use Aleve instead, as I have a

documented Sulfa allergy after having experienced

hives while on Bactrim.)

Hope this helped clear up some of the confusion.

Wanda

Wanda

__________________________________________________

[Guest guest]

My sister was on sufasalazine for ulceritive colitis. It made her ulceritive

colitis worse, but nothing like you talked about. Alot of people are allergic

to sulfa, so that could definitly be a problem for those. I also have fibro/

hosimotos/ PA. My Chiro has helped me so much. I started on Humira 1.5 months

ago. I also take Mobic for pain, Lunesta for sleep. This combination is

working well for me right now. My neck and shoulder pain has been greatly

reduced by chiropractic care. Good luck. I guess none of us know from day to

day. We have rain moving in and no matter what it increases the pain in my

hands and knees. We just take it one day at a time.

Annette Small <annette.mary.small@...> wrote:

I am wondering if anyone who has been on sulfasalazine for their PA

could let me know how helpful it was.

I have PA and a high Rh factor along with fibromyalgia.

I was on Mxt for 12 months and went off it in April this year.

I didn't notice any great improvement while on it but felt it was probably

stopping joint destruction. I am also taking 35mg of Endep which does help with

muscular pain and helps me sleep.

Yesterday my Rheumatologist said she would like me to try sulfasalazine for 3

mths to see if it reduced my inflammation.

After doing some reading on the Net I'm a little wary. Not that I could find

much info on it in relation to PA . I read a report of a 34 yr old lady who died

after 5 weeks of use and it was discovered she had a rare syndrome connected

with the use of this med! I thought the possible side effects of Mxt sounded bad

enough, this sounds worse!!

Sometimes my Rheumy refers to my Psoriatic/Rhuematiod Arthritis and sometimes

just to sero-positive PA. Have others got this diagnosis? I have been feeling

better recently after a flare. The fatigue and lack of energy got me really

down. Like many of you who write, I find this disease so unpredictable.

Different joint pain from day to day, brain fog and fatigue levels and just

feeling unwell go up and down. Pain in my neck and shoulders I find the hardest

to bear. Thankyou all for what you write, it really helps to see others feel the

same things in terms of symptons and emotions.

I don't want to fill the script till I find out a little more about this med so

I would really appreciate any feedback.

Annette

[Guest guest]

i have been taking sulfasalazine for 6yrs, with no side effects. My

liver, kidney and hematology labs have always been fine. I just have

to remember to drink alot of water.

Does it help Me? I still have some swelling, stiffness and pain. But

if i go off it, it is much worse. so it is helping somewhat. The next

step would be enbrel or mtx and i am not ready for that yet. I

haven't had kids yet.

>

> I am wondering if anyone who has been on sulfasalazine for their PA

could let me know how helpful it was.

> I have PA and a high Rh factor along with fibromyalgia.

> I was on Mxt for 12 months and went off it in April this year.

> I didn't notice any great improvement while on it but felt it was

probably stopping joint destruction. I am also taking 35mg of Endep

which does help with muscular pain and helps me sleep.

> Yesterday my Rheumatologist said she would like me to try

sulfasalazine for 3 mths to see if it reduced my inflammation.

>

> After doing some reading on the Net I'm a little wary. Not that I

could find much info on it in relation to PA . I read a report of a

34 yr old lady who died after 5 weeks of use and it was discovered

she had a rare syndrome connected with the use of this med! I

thought the possible side effects of Mxt sounded bad enough, this

sounds worse!!

>

> Sometimes my Rheumy refers to my Psoriatic/Rhuematiod Arthritis and

sometimes just to sero-positive PA. Have others got this diagnosis? I

have been feeling better recently after a flare. The fatigue and lack

of energy got me really down. Like many of you who write, I find this

disease so unpredictable. Different joint pain from day to day, brain

fog and fatigue levels and just feeling unwell go up and down. Pain

in my neck and shoulders I find the hardest to bear. Thankyou all for

what you write, it really helps to see others feel the same things in

terms of symptons and emotions.

>

> I don't want to fill the script till I find out a little more about

this med so I would really appreciate any feedback.

> Annette

>

>

[Guest guest]

I have been on Sulfasalazine for a little over a year.

The only side effect was that initially I lost about

35 lbs, because I just wasn't hungry. Not that that

was a bad thing, in my case. Otherwise, I haven't had

any trouble with it.

--- Annette Small

<annette.mary.small@...> wrote:

> I am wondering if anyone who has been on

> sulfasalazine for their PA could let me know how

> helpful it was.

> I have PA and a high Rh factor along with

> fibromyalgia.

> I was on Mxt for 12 months and went off it in April

> this year.

> I didn't notice any great improvement while on it

> but felt it was probably stopping joint destruction.

> I am also taking 35mg of Endep which does help with

> muscular pain and helps me sleep.

> Yesterday my Rheumatologist said she would like me

> to try sulfasalazine for 3 mths to see if it reduced

> my inflammation.

>

> After doing some reading on the Net I'm a little

> wary. Not that I could find much info on it in

> relation to PA . I read a report of a 34 yr old lady

> who died after 5 weeks of use and it was discovered

> she had a rare syndrome connected with the use of

> this med! I thought the possible side effects of

> Mxt sounded bad enough, this sounds worse!!

>

> Sometimes my Rheumy refers to my

> Psoriatic/Rhuematiod Arthritis and sometimes just to

> sero-positive PA. Have others got this diagnosis? I

> have been feeling better recently after a flare. The

> fatigue and lack of energy got me really down. Like

> many of you who write, I find this disease so

> unpredictable. Different joint pain from day to day,

> brain fog and fatigue levels and just feeling

> unwell go up and down. Pain in my neck and

> shoulders I find the hardest to bear. Thankyou all

> for what you write, it really helps to see others

> feel the same things in terms of symptons and

> emotions.

>

> I don't want to fill the script till I find out a

> little more about this med so I would really

> appreciate any feedback.

> Annette

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

__________________________________________________

[Guest guest]

> I am thinking maybe the medicine is slowly working...if so,

> YAY!!!!!!!!

>

> Kat

>

Kat....I hope that's the case for you. YAY from me too! Not sure about

side effects from this med but someone on here will know. -Betz

[Guest guest]

>Hi Kat im also { when i take them !!} are on this medication. i was

told the sleeping being so tired and drained was part of the pa.

This rapidly reduced once i started to build my recommended tablets.

heart burn is common in some people can be given something that

helps this and protects the tummy lining to reduce the heart burn.

i left mine for some months but never got any better so do take the

other tablets to support the heart burn. I used to get a sudden

erge to have to sleep a desprate tiredness that would pass once id

had a kip. hope this helps and try stick with it unlike me { please

dont tell my consultant oh hell scarey man . im planning to get back

on track v soon.

> Hi Everyone!

>

> I just have a quick question...It has been a month that I have

been

> on Sulfasalazine and I just wanted to see if the side effects I am

> having are normal.

>

> I have been very tired and drained...add to it I feel like my body

> is, I can't even describe it properly, heavy-like and icky. Kind

of

> like right before you get slammed with the flu bug or something.

> The tiredness isn't on the list of side effects and I am assuming

I

> feel generally blah as a result. I have even been going to bed

> early...with is unheard of for me!!! I also have had heart burn,

> especially right before and right after eating. But so far it

> hasn't been too bad.

>

> Everything else seems ok...in fact I went to get my hair cut and

> colored yesterday...and the part I ALWAYS DREAD - shampooing and

> cleaning my hair on those uncomfortable sinks - actually didn't

hurt

> me. In fact, I usually end up hurting badly on my neck for days

> after getting haircuts - this has been going on for years. And

> right now I am ok!! I enjoyed the scalp massage like a normal

> person and today the neck doesn't hurt more than usual. I can't

> even remember the last time I haven't hurt after a hair cut!

>

> I am thinking maybe the medicine is slowly working...if so,

> YAY!!!!!!!!

>

> Kat

>

[Guest guest]

I have been very tired and drained...add to it I feel like my body

is, I can't even describe it properly, heavy-like and icky. Kind of

like right before you get slammed with the flu bug or something.

I am always tired, but I don't know if it's the sulfa or combined with all... I

take a lot of other things with that one...

Love and Peace Always

Shaun and Barb

[Guest guest]

I am taking Sulfasalazine and MTX. I've been on Sulfasalazine for 2 months

(six pills a day). I have notice to change in my condition. My Rheumy has

asked me to consider MTX and Remicade. I will go in next week for a

follow-up. I think I'm going to try the Remicade.

The only stomach problems I've had was when my Dermatologist put me on

antibiotics for my acne.

Kate

At 07:32 AM 1/31/2007, you wrote:

>Hello,

>

>I'm taking Sulfasalazine for PA and basically, it hasn't done much so

>my doctor has just upped my daily amount to six pills a day and I now

>take Naproxen SR once a day for pain (when required).

>

>I noticed since the Sulfasalazine has been upped, I'm suffering from

>insomnia, upset stomach (I also take Nexium for GERD) and zero

>appetite. I basically have hives nearly all the time but have had

>them long before the Sulfasalazine.

>

>Could anyone else out there, who is taking Sulfasalazine or has taken

>it, please give me some info on how it workd for them?

>

>Thank you.

[Guest guest]

Thank you for writing. All this is very new to me and

I haven't really learned much except from some reading

but what exactly does MTX and Remicade do? This is

something you would take along with sulfasalazine.

V

[Editor's Note: Sulfasalazine is a DMARD. MTX (methotrexate) is a also a

DMARD (disease modifying anti-rheumatic drug) and Remicade is a biologic drug (a

form of DMARD). DMARDs and Biologic medications work by stimulating or

restoring the ability of the immune system to fight arthritis and rheumatic

disease by changing very basic parts of the immune system. Put more simply,

sulfasalazine works by modifying the immune system. MTX and Remicade work by

modifying the immune system as well. Since every human is different, some people

do better on one DMARD compared to another. For some people, sulfasalazine

works wonders, while other people are either allergic to sulfa drugs or find

that sulfasalazine doesn't work for them but MTX, Arava, Enbrel, Humira or

Remicade does. Since PA is a progressive disease, treating symptoms helps today

but does nothing that may help prevent the disease from getting worse whereas

DMARDs and Biologics may slow the progression so that the march of the disease

through your body slows down to a crawl. This is why many of us have decided

that merely using ONLY an anti-inflammatory or pain killer is like putting a

bandaid on gangrene. Unless you do something to stop the spread of gangrene, it

will spread through your body and PA will spread unless it is treated with

DMARDs and biologics. There is no right answer as to which drug will work best

for you but if you are not responding well to sulfasalazine, you should

definitely talk to your rheumy about changing to one of the other drugs. Kathy

F.]

[Guest guest]

Vivian - some of the drugs are taken together. I'm taking both MTX

and Humira right now. I don't know whether sulfasalazine is combined

with others.

Just remember that there is no need for any of us to be martyrs. If

you are not satisfied with the level of improvement you are getting

on whatever med you are taking, let your rheumy know that in very

strong terms. I just tell mine, " I'm much better than I was back in

June, but this level of pain (or fatigue, or skin issues) is still

not acceptable. " Their job is to work with us on finding the best

combo for us, so that we can live as normally as possible.

regards,

sherry z

>

> Thank you for writing. All this is very new to me and

> I haven't really learned much except from some reading

> but what exactly does MTX and Remicade do? This is

> something you would take along with sulfasalazine.

[Guest guest]

Thanks Sherry - Most definitely. If this dose of

sulfasalazine doesn't work for me, I would absolutely

insist on a change in medication. Also, medication

options will be something I'll be bringing up to my

rheumy on my next visit.

Thanks again,

Vivian

________________________________________________________________________________\

____

Don't get soaked. Take a quick peak at the forecast

with the Search weather shortcut.

http://tools.search./shortcuts/#loc_weather

[Guest guest]

Hi-

My 2 cents:

I have been taking the Sulfa drug for approx. 6

months. I didn't notice anything the first 3 months

with the exception of BAD GERD (OMG!!!) BUT

After my body got adjusted (3mths or so) I haven't had

it since....Also- I had been in bad pain- etc and once

this drug was added- my symptoms are present but they

do not affect my ADL (activities of daily living)

I really attribute this to helping my life HUGE!!!

I

________________________________________________________________________________\

____

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[Guest guest]

Hi-

My 2 cents:

I have been taking the Sulfa drug for approx. 6

months. I didn't notice anything the first 3 months

with the exception of BAD GERD (OMG!!!) BUT

After my body got adjusted (3mths or so) I haven't had

it since....Also- I had been in bad pain- etc and once

this drug was added- my symptoms are present but they

do not affect my ADL (activities of daily living)

I really attribute this to helping my life HUGE!!!

I now take 4 pills dail;y (2/am, - 2pm)

The only thing I worry about is Birth control pills

and antibiotic drugs....????

I take both and Im a little nervous about whether my

BCP's are still good?

I am thinking about one more baby....a year from now-

but, ill post about that next.

Good Luck!

________________________________________________________________________________\

____

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[Guest guest]

I just started Sulf. this morning. If it doesn't work real well, we will

add plaquinel. My main object is to get off of Prednisone.

I took my first pill at about 7:00 and feel pretty good, just a slight

headache right now. Did you have any side effects?

Ontario

[ ] Sulfasalazine

> Well Sulfasalazine was working well for me...I have been on it since

> August06. But I have been suffering the last couple months so I think

> it doesn't work anymore. So I have tried Sufasalazine and Enbrel.

> What would be next? Any ideas? MTX sounds scary...

[Guest guest]

Hello Vi,

Don't be afraid of MTX. It really isn't any more scarey than all the other meds

we

have to chose from. I have been taking 15mg a week for almost 5 years. It

still

makes me nauseous sometimes, but it also lets me work in my flowers and go

shopping

with my daughter. (If we go slow) I tried Enbrel back in 2003 and quite

frankly, those

injections scared me more than the MTX. And unless you have really good

insurance,

MTX is the least expensive. I would not have as much trouble with nausea as I

do if I would

take the folic acid regularly. I also messed up my stomach early on by taking

so much

OTC nsaids such as Advil and Aleve. Now I have to take all meds with food,

sometimes

milk helps. The most important thing you must keep in mind with the meds

available for PA,

when it works for you, run with it. When it quits, move up. If I were you, I

would stick

with the biologics. Most of us have to go by our health insurance formulary, so

check

it out and talk with your rheumy. A word of caution, don't expect any drug you

take

to take away All the pain. Even when they slow the progression of the disease,

they

don't take away all the pain. You have to manage a lot of that by monitoring

your

activities and stress, etc. I didn't intend to write you a book here, but only

to ask you

not let your fear keep you from trying MTX and possibly having great results

with it.

God Bless,

Janet in Ca

[Editor's Note: Well said, Janet. A lot of the scary stuff regarding MTX has

to do with methotrexate when it is used as chemo for cancer treatments. The

dosage for cancer is 800-1000 mgs. Our dosage is typically a maximum of 25 mgs.

If you take anything at 40 times your current level, it will probably do scary

things to you (even water). MTX has been used to treat RA and PA for over 20

years and it has withstood the test of time. Yes, some people experience side

effects from MTX but some people are allergic to peanuts, too. Just because

your neighbor can't take peanuts, it doesn't mean that you can't. Kathy F.]

-------------- Original message --------------

From: " vicenza77 " <vicenza77@...>

> Well Sulfasalazine was working well for me...I have been on it since

> August06. But I have been suffering the last couple months so I think

> it doesn't work anymore. So I have tried Sufasalazine and Enbrel.

> What would be next? Any ideas? MTX sounds scary...

[Guest guest]

Oh yeah! I think you always have side effects from

medications...for me, i was lucky. I had indigestion and heart burn

at first, so i slowed down the weening process...fatigue too...but

after a couple months, no real side effects.

But now I am folate deficient as a result of teh meds, so i have to

take tablets daily now too. Which is good, cause it got rid of an

irritating mouth sensitivity I acquired - ie couldn't eat salads or

anything crunchy. It was like nails on a chalkboard.

ttyl

[Guest guest]

Hi....I take sulfasalazine too and I have a poor

appetite (which isn't such a bad thing!). Tiredness

too but that could be from a lot of things. HOw much

sulfasalazine are you on, a day? I'm up to six pills

daily.

Bye...

[Guest guest]

i have recently started the sulfasalazine. anything i should be aware of? do i

still take prescribed anti-imflamatories? only info i got from rheumy was that i

could discontiue the folic acid. so i need some experianced info. hope you can

help!.....casey

Vivian Rademacher <vjrademacher@...> wrote:

Hi....I take sulfasalazine too and I have a poor

appetite (which isn't such a bad thing!). Tiredness

too but that could be from a lot of things. HOw much

sulfasalazine are you on, a day? I'm up to six pills

daily.

Bye...

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

Looking for earth-friendly autos?

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[Guest guest]

Casey,

Remember to get your blood work done regularly. I

still take naproxen with my sulfasalazine. Wasn't

aware I could at first because my rheumy didn't say

much to me at all. Also remember that sulfasalazine

takes a long time to start working. You'll notice

discoloration when you go to the bathroom too.

Hope this helps some...

__________________________________________________