Re: Decisions.....MTX? ARAVA? IMURAN?

[Guest guest]

Adam, wow, it sure sounds like you've come through a really bad spell. I'm sorry

that you had such a terrible time of late. I was unable to stay on MTX for more

than 6 months because it elevated my liver panels, but I have now been on Arava

for almost a year. I have an occasional glass of wine (I mean occasional, not

nightly so I can't speak to that) and so far, I have had no adverse liver

reaction. However, I also don't feel that Arava has done much for my PA. I

have now been on Humira and Arava since late Sep and am feeling better than I

have in years. So, my experience with Arava has no negatives, but it also has

brought no positives either.

Please let us know what you decide on and whether it works for you.

Wishing you wellness,

Kathy F.

Now I'm curious about this group's experience with these. What can I

expect in the way of negative reactions, in particular? Rheumys don't

seem to tell you all the horror stories - mine had certainly not

mentioned s- and for a while I didn't know what was

going on. I know D has had good luck with Methotrexate for many

years, but other than what I read on the web don't know much about

Immuran or Arava.

Adam

[Guest guest]

> Please let us know what you decide on and whether it works for you.

>

> Wishing you wellness,

> Kathy F.

>

> Now I'm curious about this group's experience with these. What can

I

> expect in the way of negative reactions, in particular?

I have had negative reactions to several of the DMARDs. i seem to be

sensitive. i had flu-like symtoms from mtx for the 2-3 months i was

on it before my liver got angry. i recently tried Arava which gave

me such stomach pain and intestinal distress that i stopped that

too. i am allergic to sulfa, so i stopped sulfasalazine several

years back. luckily, large doses of NSAIDS kept me in reasonable

control for long periods between these drugs. i have been on Enbrel

for about a month. the joint pain is, for all intents and purposes,

gone(although i'm still on the NAID). the P is improving but

slowly. no negative reaction to Enbrel.

My doctors have told me that my reactions are " highly unusual " , i

don't believe them.

Good luck with the decision. if you have a reaction, keep a close

eye on it. i thought that it would just get better.....

By the way, would you explain s- please?

Rheumys don't

> seem to tell you all the horror stories - mine had certainly not

> mentioned s- and for a while I didn't know what was

> going on. I know D has had good luck with Methotrexate for

many

> years, but other than what I read on the web don't know much about

> Immuran or Arava.

>

> Adam

[Guest guest]

s- Syndrome can be horrible and fatal (3 - 15%). It one

of the many ways in which people exhibit an allergic reaction to

several drugs, in my case Sulfa (which is the most common cause).

Typically, it begins with mucous membrane blistering, then skin

lesions (mine didn't - they came later). These are really evil in

some folks in that their skin sloughs off and exposes them to massive

infection. Another name for it is Toxic Epidermal Necrolysis. My

event began with headache, chills, and intense joint swelling and

aching - the skin and mouth came later.

If you Google " s- Syndrome " you'll see that the symptoms

and proposed treatments are not in agreement from site to site and

that my reaction is not really typical, but that's what the docs

decided. Don't look at the SJSsupport.org web site unless you like

really awful pictures - I wasn't like that). What was clear is that I

was having an intense reaction to Sulfa (SJS or not) and that the

steroid treatment for it worked. My case went like this:

Three hours after I took a second day's Sulfasalazine tablet with my

dinner, all my joints (and I mean all, not just the PA affected ones)

began to swell. I was working at my computer in the basement, and

discovered I couldn't stand up because my knees and ankles wouldn't

hold me (even though they were not really very sore as I sat there, I

couldn't put weight on them). I crawled upstairs on elbows and knees,

and is usually my way, refused my wife's very sensible suggestion

that I go immediately to Emergency - this would wear off by morning,

I said, as the Sulfasalazine wore off, and I wouldn't take another.

Through the night, the ache and throbbing was extremely intense in

waves but I dozed a bit in between. I stayed on the sofa in the den

with a coffee can for relief rather than go upstairs. I was

determined to tough it out (I know, I know..., but I hate hospitals

more than I mind a pain that might go away).

By early Monday morning, however, I was much worse and since I still

couldn't walk or use my hands, we called an ambulance to Emergency

where they admitted me immediately, noted the extremely swollen

joints (inflated rubber gloves for hands), red rash, blisters under

and at the tip of the tongue, rising white blood cell count, rapidly

falling blood pressure, pulse over 100, and very intense malaise.

They started an IV drip of saline (my blood volume was all in my

joints) and then added a steroid (a relative of Prednisone), then

Benedryl, then Losec. Four hours after that, having demonstrated that

I could walk unaided, I had a chest X-ray, and my wife drove me home.

The skin redness faded in one day, the blisters in the mouth and

joint swelling in two, and as a side effect, all my psoriatic lesions

came clean. Now I'm on a weaning dose of Prednisone, and the

psoriasis is coming back, of course - can't win 'em all.

Methotrexate, Arava, or Immuran next, I guess. Hope I don't get an

infectious disease though, because now I'm allergic to both

Penicillin and Sulfa.

That's my story. Not sure it was SJS, but it sure was an

uncomfortable reaction and the onset only took a few hours. My theory

is that folks like us who have hair trigger immune systems anyway

(we're allergic to ourselves, after all), will always have reactions

that start with what's already wrong (joints and skin, say) getting

worse. I've had a number of allergic reactions over the years but

they've never caused any trouble breathing or lung involvement -

that's not my way - I get hives or a rash and swell up. On the other

hand I get about one cold a year and haven't had the flu for a decade.

Adam

At 12:38 PM +0000 1/25/04, nolemmingi wrote:

> > Please let us know what you decide on and whether it works for you.

>>

>> Wishing you wellness,

> > Kathy F.

>>

>

>Good luck with the decision. if you have a reaction, keep a close

>eye on it. i thought that it would just get better.....

>

>By the way, would you explain s- please?

>

>

>

>

>Rheumys don't

>> seem to tell you all the horror stories - mine had certainly not

>> mentioned s- and for a while I didn't know what was

>> going on. I know D has had good luck with Methotrexate for

>many

>> years, but other than what I read on the web don't know much about

>> Immuran or Arava.

>>

> > Adam

[Guest guest]

In a message dated 1/23/2004 10:55:27 AM Eastern Standard Time,

abell@... writes:

> My next choices, apparently (to be discussed soon) are

> Arava,

> Methotrexate, or Immuran.

Hi Adam, there is a very good summary of the DMARDs (as well as NSAID,

biologics, etc) in this month's issue of Arthritis Today. I get the mag free in

my rheumy's office, but I think you can go online to get it. It was very

helpful for me in making a decision...I have a similar challenge as I work in

the alcohol industry, so mtx is not an option.