RE: New to Board, with Question (of course!)

[Guest guest]

Hi Harry,

I was diagnosed in 2000 with PA and the first rheumy put me right on

Azulfadine which I had a horrible allergic reaction to due to the

sulfa......I refused to take MTX because of all of the side affects, nausea,

hair loss, stomach upset, fatigue., etc., etc., and it acts differently on

everyone but I did not want to chance it....it IS a chemotheraputic drug

after all and that scared me to death! I waited and " listened to my body "

and over the summer decided, with my rheumy, that it was " time " and Enbrel

was out for a while and good things were being said. Of course once you read

the " possible " side affects it would terrify one!!!! I went for

it.....biologic sounded healthier(??!!) and I have been very happy. It was a

dramatic change...no more stiffness or fatigue and not hard to

inject....like a person that has to take a daily insulin shot....and this is

only twice a week and now approved for 2 shots in one day! I hope this helps

you and I wish you the very best of luck.

Carole

>From: " whereswjl " <whereswjl@...>

>Reply-

>

>Subject: [ ] New to Board, with Question (of course!)

>Date: Fri, 19 Dec 2003 17:17:02 -0000

>

>Hello all,

>

>I just discovered this list yesterday, and must say in the little

>time I've looked through it, it looks like a great source of

>information, compassion, and camaraderie.

>

>Just a quick summary - I have had psoriasis for 20 years, and

>developed PA last spring. I have been on Arthrotec since summertime,

>which does help some. However, in the last month or two, I have been

>getting more swelling in the hands and feet. I'm going to two

>rheumatologists (I like having second opinions) who have both

>recommended a more aggressive approach, since I am still early in my

>onset and have not had any joint degradation.

>

>Anyway, one has recommended MTX, and the other Enbrel. I'm sure many

>have posted concerns over both that I also have. The MTX of course

>has the potential GI issues, while the Enbrel and its potential to

>inflict MS and the like scares the bejiminies out of me. I'm sure its

>been asked before, but not having the time to go through 34000+

>messages, could I ask for feedback or recommendations?

>

>I know that different remedies have differing effectiveness for

>everyone. I'm just looking for something to bring some relief from

>days when the PA is especially bad (as opposed to tolerable, which is

>what I hope to get every day right now).

>

>Thanks everyone. My thoughts go out to all, and I'm very glad I've

>found this list. I look forward to it providing some comfort on those

>days when I'm a little down. I won't get to read and post as often as

>I'd like (work and family tends to keep one busy) but will visit as

>often as I'm able.

>

>Harry

>

>

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[Guest guest]

Hi Harry -

welcome to the board.

I have Pa and recently (3rd week to be exact)started taking Mx. I

like you seeked some advise about the Mx and Enbrel question on this

board. Some of the points that made me decide on Mx are:

Cost - Enbel is up to 1300 + dollars a month and Mx is less than 30.

So be sure you have insurance before you start Enbrel, and most

insurance companies will likely make you start on Mx first anyway.

Another thing is Mx has been around for a long time. I am 37 years

old, the long term effects are likely to be more predictable. I take

7.5 mg - three tiny pills once a week - remember chemo patients take

large doses on IV poles. Higher doses may cause me trouble in the

future.

To date I have only positive things to say about Mx - the pain in my

hands and feet get better every week and I have no side effects. I

swim four times a week now - no fatigue - my cloudy head is gone.

Dont get me wrong - if Mx quits working I will be the first to take

Enbrel because I dont ever want to go back to the pain I had before.

The risk is far less than the releif I am having at this time.

I feel for you Harry - pain sucks.

So think it through and do what you beleive is best for you !!

Merry Christmas

> Hello all,

>

> I just discovered this list yesterday, and must say in the little

> time I've looked through it, it looks like a great source of

> information, compassion, and camaraderie.

>

> Just a quick summary - I have had psoriasis for 20 years, and

> developed PA last spring. I have been on Arthrotec since

summertime,

> which does help some. However, in the last month or two, I have

been

> getting more swelling in the hands and feet. I'm going to two

> rheumatologists (I like having second opinions) who have both

> recommended a more aggressive approach, since I am still early in

my

> onset and have not had any joint degradation.

>

> Anyway, one has recommended MTX, and the other Enbrel. I'm sure

many

> have posted concerns over both that I also have. The MTX of course

> has the potential GI issues, while the Enbrel and its potential to

> inflict MS and the like scares the bejiminies out of me. I'm sure

its

> been asked before, but not having the time to go through 34000+

> messages, could I ask for feedback or recommendations?

>

> I know that different remedies have differing effectiveness for

> everyone. I'm just looking for something to bring some relief from

> days when the PA is especially bad (as opposed to tolerable, which

is

> what I hope to get every day right now).

>

> Thanks everyone. My thoughts go out to all, and I'm very glad I've

> found this list. I look forward to it providing some comfort on

those

> days when I'm a little down. I won't get to read and post as often

as

> I'd like (work and family tends to keep one busy) but will visit as

> often as I'm able.

>

> Harry