Re: Stopped taking sulfasalazine

[Guest guest]

Hi there,

I am also on sulpasulazine and this drug makes you light sensitive and

should really watch how much sun you get, l was told to put on

sunscreen and not be in the sun for to long. Hope you feel better.

--- " vjrademacher " <vjrademacher@...> wrote:

>

<<I was taking sulfasalazine for about a year and just last month, was outside

in 36 Celsius temperatures waiting for a bus and noticed a weird rash on my

hands that evening. It had a strange sensation...burning, tingly and

eventually itchy. . . . my family doctor said he didn't know what it was, I

mentioned the sulfasalazine and he suggested stopping it to see if the rash goes

away.>>

[Guest guest]

VJ - from Medicine.net:

" Continuing headache, allergic reactions, and photosensitivity may

develop during sulfasalazine therapy and require medical attention.

Some of the allergic reactions may progress from a rash to difficulty

in swallowing, blistering, peeling, or loosening of the skin, aching

joints and muscles, and unusual tiredness or weakness. It may be

accompanied by fever. The more severe allergic reactions are rare. "

I would DEFINITELY stop the med, to prevent this from developing into a

more serious problem called s- syndrome. It is rare, but

be sure to seek medical attention immediately if your rash starts to

blister, if you get any systemic symptoms (nausea, fever, etc.), or if

your skin starts to peel off.

You should recover fine from this, but you need to try some other drug

instead of the sulfa. There are plenty of others to try.

best regards,

sherry z

[Guest guest]

I had a very unusual reaction to sulfasalazine, one that I did not associate

with the drug when it occurred: blisters under my tongue.

I went to my doctor (she was both my primary physician and my rheumatologist)

and she could see the blisters; they were huge. She then went to her

computer and I felt she was doing some research. When she came back she said:

" I've never seen this before and I didn't even know about. You are having a

very rare reaction to sulfasalazine, one that can be very serious because the

drug is interfering with your mucus glands. Stop it immediately. " I did and

the blisters went away.

That was my experience with the drug ... Vjrademacher, I'd have that rash of

yours checked out soon, just to be on the safe side.

BeingIrish

[Guest guest]

Thank you for the info Sherry. I've been off the

sulfasalazine for four days now and won't go back on.

Wednesday, I'm off to see a new rheumatologist and

will be bringing him a list of concerns. I've never

heard of s- syndrome before. Sounds

scary.

Thanks again....VJ

[Guest guest]

Hi BeingIrish, I see a new rheumy on Wednesday. Got

my fingers crossed this one will be a keeper! Sadly,

my own family physician, who I saw the other day just

basically said " oh...you have a rash " and it seems

that my own research, questions answered in this type

of forum and talking with others who have

friends/family with arthritis, is more helpful!

Glad you stopped the sulfasalazine. Oh...I nearly

forgot, how long were you taking it before this

happened to you? Also, how long did it take for your

reactions to go away? I've been off sulfasalzine for

four days now and there's no change in my rash....as

in, going away.

Thanks for your input. I really appreciate it.

[Guest guest]

Hello Vjrademacher,

The blisters under my tongue began shortly after I started taking the

sulfasalazine; I'd say within a couple of weeks. When I stopped the drug, the

blisters immediately disappeared, within a couple of days.

The only time I developed a rash from a drug is when I took one tablet of

methotrexate many years ago. The next day I came down with a very serious case

of pustular psoriasis that covered nearly my entire body except for my face.

It was horrible! My doctor later told me that I had the equivalent of

second degree burns and that my condition carried a one in three chance of being

fatal (I'm glad he waited until I was better to tell me that). After searching

the web, I suspect that it was just a coincidence that I had taken the

methotrexate the day before the pustular psoriasis began and that there was no

cause

and effect. I was under a lot of stress at work and I think that's the more

likely culprit. Stress can cause one's body to react in mysterious ways.

Good luck with your doctor appointment on Wednesday.

--BeingIrish

[Guest guest]

About the role stress plays -

My pustular P became so bad that it FINALLY got identified correctly as

P, after several years of just peeling fingers. Here's the stress

situation that triggered it:

I had 19 extra people living in my home after Hurricane Katrina, none

of them family. Friends and friends of friends. I cooked, cleaned,

did the laundry, and cried with them. I spent hours at night online

trying to help them get registered for FEMA and Red Cross, trying to

help them find friends and relatives scattered all over the country,

and trying to get their pets rescued. There were air mattresses on

every available square inch of floor space. Not all of these people

were there at once, but the average was about 8-10 at a time. This

went on until early October. I had one young lady who stayed with us

until January.

In October I took a job with the SBA doing disaster recovery work. I

was working 12 hour days 7 days a week, with an hour drive each way to

the disaster recovery center I was assigned to. After a while it was

reduced to 6 days a week, then to 8 hour days 6 days a week. I did

this for 6 months.

The whole thing was brutal. The end result was that I've been disabled

since April 2006. With the help of some of the " big gun " drugs, I'm

slowly crawling back to a semblance of normal life. The most important

thing I learned was that you can't just keep pushing your body beyond

reasonable limits! So yes, I can guarantee that stress plays a HUGE

role in this disease.

regards to all,

sherry z

>

I was under a lot of stress at work and I think that's the more

> likely culprit. Stress can cause one's body to react in mysterious

ways.

>

> Good luck with your doctor appointment on Wednesday.

>

> --BeingIrish

>

[Guest guest]

you know, im currently on sulfasalazine, 2 a day. very low dose to let mtx clear

out. now im on 4 per day. if it doesnt work i go straight to the humira or

enbrel. i asked my rheumy yesterday during visit about the side effects, and the

skin rash that was mentioned earlier did not come up. but he also said he

wouldnt want to put anyone on 6 sulfasalazine per day. so maybe dose too

high?.......casey

Vivian Rademacher <vjrademacher@...> wrote: Hi BeingIrish, I see

a new rheumy on Wednesday.

[Guest guest]

Hi...yes, I don't doubt that 6 sulfasalazine pills per

day is probably too much. I " ve been off a week today

exactly. My rash is still there. Saw a new rheumy

yesterday who is going on a whole new track of

thinking. He's thinking my problems are more

endocrine related?????? and muscular rather than

joint. Had 7 tubes of blood taken for testing,

xrays....so, I'll see soon enough. One thing he

asked, that made sense was, given I had a diagnosis of

PA, has any dermatologist or skin specialist ever

confirmed I have PA? And, nope...I " ve never seen a

dermatologist. It's all very frustrating and will

take time.

Take care......hope you have success with your

medication!

VJ.