Sulfasalazine

[Guest guest]

Hi Amy,

I can't take sulfa.. because of allergies however when i was at GF

Strong rehab hospital last year one of the patients started it and

her reaction was identical to yours... she was bedridden from it and

told us all it was horrible. hope this helps.

karen

>

>

> 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

[Guest guest]

Hi Amy,

I have the same problems with sulfasalazine. I can't

imagine why the rheumies insisted that I take it

knowing that I've had GERD for years. After a week of

intense nausea and vomiting I stopped taking it. After

I was well, I tried again to take it, and the same

problems occurred. At my last rheumy visit I told them

I will no longer take it and why. I really don't think

it was making much of an impact on the PA anyway. So,

I'm currently doing just Humira.

And I have another interesting note for Humira users.

We had taken my shot along on our trip to Virginia in

a cooler with ice. By the time we got there, the ice

had melted and the injection was room temperature. We

injected anyway, and I'm here to say that I had no

fatal side effects. So, no need to fear the shot if it

hasn't stayed too cold for a short period of time.

Warm blessings, Jane

--- <missionblondie@...> wrote:

>

>

> Hi Amy,

>

> I can't take sulfa.. because of allergies however

> when i was at GF

> Strong rehab hospital last year one of the patients

> started it and

> her reaction was identical to yours... she was

> bedridden from it and

> told us all it was horrible. hope this helps.

>

> karen

[Guest guest]

Amy,

Yes, I tried asulphadine with similar side effects, just not as intense. My

stomach had gas pains and I felt a bit nauseas. I had the same problem with

all the celebrex type drugs too. I'm nervous about the biologics but know I'm

heading down that road. My mother is on remicade.

Note to editor. I don't know how to cut and paste but will try to learn.

[Guest guest]

,

For now, just keep doing what you're doing! If you need help learning how

to cut and paste, let us know. Most importantly, if you can't do or you

forget to do it, post anyway! I'll trim your post for you. So please don't

worry

if you're doing it right, OK?

Best,

Kathy F, Moderator

In a message dated 12/6/2004 7:15:55 PM Eastern Standard Time,

mcfast1124@... writes:

Amy,

Yes, I tried asulphadine with similar side effects, just not as intense. My

stomach had gas pains and I felt a bit nauseas. I had the same problem with

all the celebrex type drugs too. I'm nervous about the biologics but know

I'm

heading down that road. My mother is on remicade.

Note to editor. I don't know how to cut and paste but will try to learn.

[Guest guest]

Sulfasalazine (azulfidine) is what I have been on for 3 years. The

first two weeks I took it I had diarrhea but that went away and it

worked pretty good, but I wanted to be much better than it was

allowing. So, I am now on MTX and if that doesn't work by itself

will go on Enbrel or Remicade. Sorry you couldn't take the

sulfasalazine! Are you going to be started on something else?

Sharon

>

>

> 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

[Guest guest]

i had the same reaction and it scared the crap outta me because i

got really dizzy. A physicians asst. prescribed it. WHen i spoke to a

real doc. he was pissed(i think he thought it was a stupid thing to

give me for the PA) and then became my doc. He's great. That was over

a year ago and now he's finally convinced me to try Enbrel, so i'm

taking celebrex,mtx and the enbrel(along with the folic acid,hrt,and

iron supp.)I noticed the enbrel was helping after the 2nd injection.

i take two a week. Today was only my 5th and i feel better than i

have in along time. I'm amazed.I can actually make a fist all the

way. sorry, i got long winded.

andi

>

>

> 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

[Guest guest]

Hi Kathy,

What are the posts from me like? When I click on reply the window is blank

so it looks like there is no previous stuff unless I specifically add it. Is

that the way you are getting it?

Thanks,

[Editor's Note: Yes, , what you see is what I get with your posts. Thank

you!!! You have set your email so that the original incoming email text is NOT

automatically included in your reply. Many other people, however, have set it

so that when they reply to email, all of the original email is included in their

reply, even that lengthy trailer at the end of each post. Unless someone edits

this out, the resultant new post becomes incredibly unwieldy and duplicative. I

don't mind doing some editing, but when over 1000 posts require editing, it is

tough on my hands as well as on my schedule. It is therefore very helpful if

people edit their own posts (bless all of you who do!) or who, like you, set

their email so that the incoming post is NOT repeated in the reply. Thanks for

asking! Are you starting to feel a bit better? Kathy F.]

[Guest guest]

It caused horrid headaches for me. I tried it two different times with the

same results.

Ks Di

[ ] 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

[Guest guest]

Dear Barb, I think you are describing a lot of us as far as how " untypical "

this disease can be. It just affects us all differently and I think in the

beginning a lot of times you don't see the joint involvement right away. I

had my jaw just basically fall apart, in about 6 months time before all the

other symptoms really hit, but still none of the many experts I saw ever

put it all together as being PA. Looking back on that, I want to say,

DuHHH too, but it doesn't do any good. It's funny about your foot, well not

funny, but strange. I had a foot doctor tell me the same thing. He said,

" No wonder your feet hurt, they are deformed. " ...I was so shocked, I just

started laughing... my normal reaction to stress. I just said, " well don't

sugar coat it doctor...lol " Even his nurse laughed. My foot was never

deformed before, so it only makes sense the PA caused the problems. I can't

understand how when we can see something so obvious, the doctor who is the

trained professional, cannot...

I've also been told my joints aren't swollen or hot and yet to me they feel

exactly that way. I've been tempted to put my knee in a heat pad and walk

in with the temperature about 200 degrees and see if they even notice...lol.

I never would though or they would never believe me again. As far as the

current medications you are on, has your doctor talked about bringing out

the big guns...like Enbrel, Humira or Arava? I'm on Arava and it has made a

huge difference in my life. I still have a lot of pain and problems, but

the difference is I'm out of bed in pain instead of bedridden in pain. I

guess that's better. I really know it is, because I'm doing so much more

every day.

Also on the pain control, maybe you could see a pain specialist who could

give you some advice on which pain drugs work best on arthritis pain. I

know my pain doctor doesn't like Vicoden because of the highs and lows it

puts you though. He likes to use time released pain meds and it really does

make a big difference. That way it's a steady stream of medication and you

never run out of your drug. (At least in a perfect world..lol) But it has

really helped me. I also get chronic bursitis and fluid on my knees all the

time. Just adds to the daily fun of what's hurting today..

It is a crazy disease and in the end, all any of us can really do is say

what is helping us. Sometimes that can help someone else and other times it

doesn't do a darn thing. We are all so different and all have different

levels of the same disease. I'd go back to both the good doctors and ask

them what else can you do? Tell them you are willing to try something new

(if you are) and check into different types of pain control. I'm just

working on my 2nd epidural now in my neck. So far they haven't been too

painful and I think " maybe'' my hand is a little bit better. It's just hard

to say. I do know the hip injection really did help. The doctor will be

dying to stick me again the next time I see him. He's gone needle mad right

now....lol.

Good luck Barb, and I hope things get better. Let me know if you go to the

doctor and what they tell you. I hope they can suggest some new medications

to get you over the bad spell. It can be pure hell while you are waiting.

Take care of yourself. Love, Fran

Hi

I usually am just lurking but now I need to get some answers. Also, I want

to thank, especially Fran for all her inspiration and the rest of the group.

I

have learned so much about this dang disease.

I was diagnosed with P a little over one year ago. The only joint that

shows

any damage is my one ankle. It really is turned over. This happened a few

years back and I was dismissed by a previous orthopedic physician and told

it

was the way I was born. DUHHHHH! I don't think so.

Over the past two years, I have seen a new orthopedic physician, who is

awesome, as well as being referred to a rheumatologist, who also is great.

Both are very caring and concerned. I don't seem to run the typical form of

this arthritis. My joints hurt like you know what, rarely any swelling or

heat. I get more of chronic tendonitis and bursitis, moving from joint to

joint.

Has anybody else ever experienced this? I am on sulfasalazine, Skelaxin,

Flexeril, and Bextra. I also take Ultram, or Darvocet, or Vicodin for pain.

Depends on the severity as to what I need. I also have some low back

involvement and had two epidurals, two facet injections, and finally two

radio frequency

ablations. I have finally had some relief in the back, not what I want, but

tolerable. The medication seems to have helped in the beginning, but now

none

of it seems to work. Just looking for some input from all of the veterans

of

this crazy disease.

Thanks for listening and letting me vent a bit too. Fortunately, I have a

very understanding and patient husband. He helps me and gets upset when I

try

to do some of the things by myself. At least with some back relief, I can

now

get the clothes out of the wash machine and dryer.

Thanks again.

Barb

[Guest guest]

Dear Barb, I totally understand what you said about Ultran making PA

tolerable, but not live able. Sometimes I think that applies to every

medication I take. At times, it only feels like the best they do is take

the edge off the pain. I'm a lot like you too where I can feel so bad going

to bed, and wake up and for about 2 hours almost feel human again. That's

normally after I take my morning pills though. It's rare for me to " hop "

out of bed in the morning. (Personally, I don't think I ever " hopped " out

of bed since I've never been a morning person).

I might be ahead of you on finishing my gifts, but you hand make yours. I

think that is just wonderful. I do mosaics and I am hoping to have a few

things done to surprise my girls. Luckily, they normally like what I make,

so I have them figured out pretty well. Both have their own apartments now,

so decorating is a big deal too.

I'm so glad you are seeing the rheumatologist next week. If you have the

time, make a list of questions and take in with you. My doctor's don't seem

to be annoyed with that at all anymore. I think they understand I have a

lot of problems and it's impossible to remember to ask about everything

unless I do write it down. Just make them understand that you need some

more help and what they are doing now, just isn't working. Hopefully, you

can get through to them and try a new medication. Sometimes just the hope

of something helps keep us going.

Thanks for writing Barb and hang in there. I'd love to see a picture of

your knitting if you send photos. Just send it to my home address if you

have the time. Take care and good luck. love, Fran

Hi Fran

Thanks for the wonderful reply. I do see the rheumatologist next week

Thursday. I will admit that the Ultram three times a day, makes it

tolerable, but

no livable, if that makes sense.

Last night I went to bed hurting and not being able to move. This

morning, I

feel good. Hope it lasts. I think I am going to definitely post more.

It

relieves some of the frustration.

Now, today, it is on with Christmas. I try to make most of my gifts but

definitely running behind. Some days it is so hard to sit at the sewing

machine.

Thankfully, I have a knitting machine that chugs along by itself and I

only

have to sit down and do the shaping.

Will keep everyone posted after my appointment.

Bye

Barb

[Guest guest]

i was prescribed suafasalazine and had some of the same symptoms.

Costello Family <costello@...> wrote:

It caused horrid headaches for me. I tried it two different times with the

same results.

Ks Di

[ ] 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

[Guest guest]

In a message dated 12/7/2004 8:18:33 AM Eastern Standard Time,

martincoyless@... writes:

I don't mind doing some editing, but when over 1000 posts require editing,

it is tough on my hands as well as on my schedule. It is therefore very

helpful if people edit their own posts (bless all of you who do!) or who, like

you, set their email so that the incoming post is NOT repeated in the reply.

Thanks for asking! Are you starting to feel a bit better? Kathy F.]

Kathy,

I would like to do this also but can you please tell me how to edit my mail

so I can make it easy on you as well.

Janet

[Editor's Note: Janet, you just did! Your post came 100% edited. Just keep

doing what you're doing - and THANKS! Kathy F.

[Guest guest]

----- Original Message -----

From: Dennis W

> My Rheumy is closed on friday so I can't ask him about this, but I need some

knowledge. I only started taking this med on Wednesday, starting with one

pill twice a day. I'm supposed to take that for one week, then go to two

twice a day for a week, then three pills twice a day from there on. My

question is, can this med make a significant difference after taking it for

two days? I'm seeing a difference or coming off a flare, I don't know which.

I'm not familiar with the drug, but here's some good info on it:

http://ibscrohns.about.com/cs/sulfasalazine/a/azulfadinefaq.htm

Nina

[Guest guest]

Ok I hope someone will reply to this. Does anyone have any experience

with Sulfasalazine? Looks like my doc wants to try this drug if things

don't improve. Would love to hear anyones experiences with it. Also

how large of a dose do/did you take.

Thanks,

[Guest guest]

Hi !

I first started out on Plaquenil..after a year when that didn't cut it alone

with my NSAID, Sulfasalazine was added.  I take the maximum dose 1500mgs in the

am and 1500 mgs in the pm.  It took about 6 months to build up in my system for

me to notice a difference.  I had to have a CBC blood test done every 2 weeks

the first few months to make sure it wasn't messing up my blood counts.  After

being on  it a year, I now get the blood work done every 3 months. The problem

with the medication is, if you get sick a lot, any time you have an infection,

my doctor makes me stop taking mine.  Since September I have been on antibiotics

7 times  and had to stop the medication each time.  I seem to be sick alot with

URI's and before the sulfasalazine I didn't get sick that much just on the

Plaquenil.  So I'm not sure if my immune system is getting worse or if its the

medication.  Make sure you are given something to protect your stomach.  My

doctor

prescribed Prevacid to take each morning.  I was using over the counter

Prilosec but it was quite pricey buying it out of pocket and for my prescription

prevacid I only have to pay $5 a month.  Good luck:)

From: ktandtm <ktandtm@...>

Subject: [ ] Sulfasalazine

Date: Saturday, July 5, 2008, 7:08 PM

Ok I hope someone will reply to this. Does anyone have any experience

with Sulfasalazine? Looks like my doc wants to try this drug if things

don't improve. Would love to hear anyones experiences with it. Also

how large of a dose do/did you take.

Thanks,

[Guest guest]

I'm not going to be of any help, but I took it about 5-6 years ago for just

a short time (weeks) and it did bad for my entrails. It does work for some,

just not me. In that timeframe I was taking Celebrex and Vioxx, and they did

bad for me also. Not much help but hopefully some idea of it.

Dennis from eastexas

On Sat, Jul 5, 2008 at 6:08 PM, ktandtm <ktandtm@...> wrote:

> Ok I hope someone will reply to this. Does anyone have any experience

> with Sulfasalazine? Looks like my doc wants to try this drug if things

> don't improve. Would love to hear anyones experiences with it. Also

> how large of a dose do/did you take.

>

> Thanks,

>

>

>

>

[Guest guest]

I had nice results with sulfasalazine for about 3 yers and then developed severe

gi problems.

Dennis W <betnden@...> wrote: I'm not going to be of any help,

but I took it about 5-6 years ago for just

a short time (weeks) and it did bad for my entrails. It does work for some,

just not me. In that timeframe I was taking Celebrex and Vioxx, and they did

bad for me also. Not much help but hopefully some idea of it.

Dennis from eastexas

On Sat, Jul 5, 2008 at 6:08 PM, ktandtm <ktandtm@...> wrote:

> Ok I hope someone will reply to this. Does anyone have any experience

> with Sulfasalazine? Looks like my doc wants to try this drug if things

> don't improve. Would love to hear anyones experiences with it. Also

> how large of a dose do/did you take.

>

> Thanks,

>

>

>

>

[Guest guest]

I forget the dosage that I was on, so I can't help you there, but Sulfasalazine

didn't agree with my stomach which is very sensitive. So I only lasted 2 or 3

days on it. I know a lot of people take it without problems so I would give it

a try and see if it works for you.

Lori

http://home.comcast.net/~queenstitcher/

http://stitchingqueen.multiply.com

[Guest guest]

I take 1,000 mg in the morning and 1,000 mg in the evening. I started

slowly and added 500 mg a day each week. I don't feel that this will be

sufficient for me. I continue to have considerable inflammation and pain.

I had been on Plaquenil for several years until I developed eye issues so I

was taken off that. I've been on Prednisone up to 60 mg a day and that was

terrific!! I was superwoman...did all the spring cleaning...but I'm down to

5 mg a day now and all the symptoms have returned. If they could just

develop a drug that acted like Prednisone without all the negative sides!

My gastro has been reluctant to treat me more aggressively since I have

liver problems. I see him again in 2 weeks and will have to press him on a

better treatment.

I will say that I have had no stomach problems at all.

_____

From: [mailto: ] On

Behalf Of ktandtm

Sent: Saturday, July 05, 2008 7:08 PM

Subject: [ ] Sulfasalazine

Ok I hope someone will reply to this. Does anyone have any experience

with Sulfasalazine? Looks like my doc wants to try this drug if things

don't improve. Would love to hear anyones experiences with it. Also

how large of a dose do/did you take.

Thanks,

[Guest guest]

Years ago I took it for a few years and it worked great and didn't bother my

stomach. Then it just stopped working for me.

Now years later I am taking a minimum dose in conjunction with other meds and

I get a blood test every three months.

Joyce

[Guest guest]

i was also taken off sulfasalazine last summer because of the effects of the

MTX. my rheumy put me on 1000mg per day (2x 500mg) i felt ok and had a couple of

flares. what i found out on my next visit that the mtx will stay in your body

for a few months. and the low dose of the sulfasalazine was to just see how my

body would tolerate it. at the low dose it would do nothing for the Pa. and the

MTX needed to clear out. when it did and blood work was perfect, he up the dose

to 4x500mg per day and after 3 more months he raised it to 5x500mg per day. its

been a little over a year and ive felt pretty good. my doctor said the the

quality of life was what he wanted to improve. the injectables will be next. but

that will hopefully be a few years down the road. good luck

casey

[Guest guest]

I have had very good results with Sulfazine. I take 8 500MG tabs a day, 4 am,

4pm combined with NSAIDs, and the usual vitamins D, folic acid and omeprazole.

My pain went from a steady 8 of 10 to about a 2 of 10.

mrtom <mrtom303@...>