Re: Addicted? Not me!/Robbie

[Guest guest]

I¹ve had AS and ReA (which is Reactive Arthritis, aka Reiter¹s Syndrome, and

not Rheumatoid Arthritis) for 18 + years. I¹m 33.

Robbie

jowicklund on 12/29/01 4:48 PM wrote:

> Robbie -

> Are you 18 years old? Or have you had AS and RA for 18 years?

> Just curious.

> Jo

[Guest guest]

Robbie -

Are you 18 years old? Or have you had AS and RA for 18 years?

Just curious.

Jo

Re: Addicted? Not me!

Well put Dennis ! Well stated. IMHO, of course.

---

Robbie in FL, AS/ReA (RS) 18 + years and counting.

feralelf@...

[Guest guest]

I was asking because my father had AS as badly as it can get, and RA also.

I have the gene for AS, and passed it on to my son, but neither of us have more

than mild symptoms. My RA, on the other hand, is considered severe.

I don't think I've ever heard of anyone getting AS as young as you did. And

Reiter's is no party, even though I understand it comes and goes.

Do you mind if I ask what meds you take? I'm having difficulty finding

anything effective that my body doesn't reject. (I also have OA, fibro, MPS,

DDD, frozen shoulder, bipolar and a partridge in a pear tree.)

Thanks,

Jo

Re: Addicted? Not me!/Robbie

I¹ve had AS and ReA (which is Reactive Arthritis, aka Reiter¹s Syndrome, and

not Rheumatoid Arthritis) for 18 + years. I¹m 33.

Robbie

jowicklund on 12/29/01 4:48 PM wrote:

> Robbie -

> Are you 18 years old? Or have you had AS and RA for 18 years?

> Just curious.

> Jo

[Guest guest]

Robbie,

18+ years is such a long time to be in pain and you'e

so young. i do hope the meds you are taking are

helping.

solibene

--- Robbie Peddycoart wrote:

> I1ve had AS and ReA (which is Reactive Arthritis,

> aka Reiter1s Syndrome, and

> not Rheumatoid Arthritis) for 18 + years. I1m 33.

>

> Robbie

>

> jowicklund on 12/29/01 4:48 PM wrote:

>

> > Robbie -

> > Are you 18 years old? Or have you had AS and

> RA for 18 years?

> > Just curious.

> > Jo

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

jowicklund on 12/29/01 5:11 PM wrote:

> Do you mind if I ask what meds you take? I'm having difficulty finding

> anything effective that my body doesn't reject. (I also have OA, fibro, MPS,

> DDD, frozen shoulder, bipolar and a partridge in a pear tree.)

> Thanks,

> Jo

>

Not at all. Currently I¹m on Azulfadine and Arthrotec, which I¹m titrating

off (both) because they¹ve lost their effectiveness. They were the first in

a long, LONG line of attempts that had some effect, but it didn¹t last. I

just finished a 6 month course of mid-dose Methotrexate that just bombed,

and did nothing but make me very, very ill.

I¹m ran the gamut, with very little success. I did every form of NSAID and

DMARD known, and can no longer tolerate most, due to ulcerations and GI

bleed. I¹m getting ready to start a course of Enbrel son. * fingers crossed

*

---

Robbie in FL, AS/ReA (RS) 18 + years and counting.

feralelf@...

[Guest guest]

solibene on 12/30/01 4:11 AM wrote:

> Robbie,

>

> 18+ years is such a long time to be in pain and you'e

> so young. i do hope the meds you are taking are

> helping.

>

> solibene

>

It¹s the opiods that have literally saved me, and given me a measure of my

life back. Without them, I¹m a wreck, and I was on the verge of suicide when

I finally got good and proper pain management. That¹s why I¹m so agro on the

whole pain meds debate. LOL.

Re: being young, I met a 9 year-old kid with JRA (Juvenile Rheumatoid

Arthritis) in my rheumatologist¹s waiting area one day. That just kicked me

in the stomach, to see this little boy on crutches from arthritis. I guess

what I¹m trying to say is that it¹s awful to be diseased and/or in pain at

any age. But, thanks for the sentiment. : ) I¹m doing ok. I have the

advantage of years of coping on my side, and I plan to live a very full

life. : )

---

Robbie in FL, AS/ReA (RS) 18 + years and counting.

feralelf@...

[Guest guest]

Robbie,

Sounds like we have the same problems. Can't take any NSAIDs, hib or

DMARDs. Methotrexate did nothing for me, so I got off to keep my liver from

being affected. My Dr. won't try Embrel or Remicade because of reactions to

other meds. So I'm back on Prednisone - which I just got off in June. It's

just 5 mg/day - which won't do much. So I'm thinking of taking 20mg on Sunday

and 15 mg on Thursday.

Let me know how the Embrel trial goes.

Jo

Re: Addicted? Not me!/Robbie

jowicklund on 12/29/01 5:11 PM wrote:

> Do you mind if I ask what meds you take? I'm having difficulty finding

> anything effective that my body doesn't reject. (I also have OA, fibro,

MPS,

> DDD, frozen shoulder, bipolar and a partridge in a pear tree.)

> Thanks,

> Jo

>

Not at all. Currently I¹m on Azulfadine and Arthrotec, which I¹m titrating

off (both) because they¹ve lost their effectiveness. They were the first in

a long, LONG line of attempts that had some effect, but it didn¹t last. I

just finished a 6 month course of mid-dose Methotrexate that just bombed,

and did nothing but make me very, very ill.

I¹m ran the gamut, with very little success. I did every form of NSAID and

DMARD known, and can no longer tolerate most, due to ulcerations and GI

bleed. I¹m getting ready to start a course of Enbrel son. * fingers crossed

*

---

Robbie in FL, AS/ReA (RS) 18 + years and counting.

feralelf@...

[Guest guest]

Hey Jo

I am on enbrel for Reiter's. Started it a month ago. I have been on

azsulfidine. I take metholtrixate with the enbrel. Nothing has worked for me

so for. I try to stay off the prednisone. My Mom, who has Rheumatoid

arthritis, has massive boneloss from prednisone. I did do a burst for Christmas

and I am tapering off now, down to 5 aday and I will be off by the end of the

week.

On the enbrel, I can't tell if it is working, yet. I do get a burst of energy

on the days I take it.

Joy in Dallas

[Guest guest]

jowicklund on 12/30/01 2:13 PM wrote:

>

> Let me know how the Embrel trial goes.

> Jo

Thanks for the well-wishes Jo. I will certainly let you know.

Robbie in FL

[Guest guest]

Dear Robbie,

I am a fairly new member to the group and I don't post too oftne, but I do

read all the messages.

I noticed that you are going to be trying the new medication enbrol. Would

you mind sharing what it is supposed to do and why you are trying it?

Thanks,

Kay

kayfrank3@...

SF Bay Area

Re: Addicted? Not me!/Robbie

jowicklund on 12/30/01 2:13 PM wrote:

>

> Let me know how the Embrel trial goes.

> Jo

Thanks for the well-wishes Jo. I will certainly let you know.

Robbie in FL