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Joined: Aug 2003
Posts: 2,717
ironchef
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ironchef
Joined: Aug 2003
Posts: 2,717
aloha peeps...

promised i'd not miss this day.

five years ago today i did my first enbrel shot (and stopped the cursed methotrexate).

i have to admit i had very poor attitude- figured this would just be yet another of the noxious thingees that didn't work and made me feel worse...after two months i was
just about ready to call it a failure...never like 'felt' it going to work...then one morning
i was making coffe and realized i hadn't spent a lot of time stretching the kinks out and that my perpetual friend...that blowtorch in the butt...flamethrower, arc welder...was kind of like sleeping...it was still there but kinda on mute iykwim.

so i told the enbrel folks to keep sending it to me and my rheumy was pleased...in the
interest of what is called disclosure i must admit that amgen/wyeth provided me with free enbrel for a little less than two years.

i've read all of the lit and follow the test result and publications about aftermarket follow up closely. i assume based on my experience that i am amongst those with that higher
response level.

there's a dutch follow up study reporting that the average for enbrelees (followed for 3 years) is 1.1 infection/flu/sinusitis/cold/toothache etc per year per person. i've done way better than the average. personally i've had three 'events' in five years- a bad, bad cold,
sinusitis that came to stay, and a fall that left me with a huge open wound on a knee...
oh and a kind of funk in which i just skipped shots a several weeks.

in general, the most conservative approach is that if you have an infection/flu/cold etc
well, golly you stop doing the enbrel until you're FULLY RECOVERED from whatever.
in my second year of enbrel my rheumy gave me permission to decide on my own the when of when you decide that you have sufficient confidence to do or not do the shot.
(he did say he'd appreciate my telling him, but it was my decision.)

enbrel literature would suggest that users hit a peak at about the six month mark...
i think they should have tested and or report on longer term experience.

my own experience is that given enough time enbrel has influenced every aspect
the whole spectrum of spondy monster activity. enbrel is not, for instance, reported as
helping with iritis based eye problems, yet somewhere in the third year that turning
corkscrew in my right eye stopped turning and the pain in the eye has kept lessening.
enbrel has really toned down the blinding pains in the rib cage, helped with the inflammation in my left hand and thumb ( still hurts if i try to do too much with it), and
i hadn't been able to move my neck much or turn my head for years, now i can.
i don't seek out walking for 'exercise' but i rarely crab walk now, pretty much walk in
a normal gait...use a cane in the winter time...don't even think about running.

now enbrel doesn't do anything for the damaged bits, scoliosis still hurts all the time,
bone spurs in heels and thumb are still there, had tendonitis twice and my torn up
knee is still torn up...and that pain in the butt does say hello somedays.

butt all in all...i think i've had excellent results.
i began experimenting with dosage about a year ago (with permission) partly funk
and partly financial and partly iu still hate needles...and i have found that for me
one 25mg shot a week is working just as well as doing two of 'em...according to their
lit this should not be the case; i am beginning to believe there is a cummulative effect...
almost, as if a booster shot weekly puts you back on the path.

changing rheumy's yet again, i'll probably catch heck, but that';s the story.
i think back to 2004...so long ago really.

as i am want to say from time to time 'ya got's to live thru the "eat me" "drink me"
phase of this process'...and sometimes ya gets lucky.

stolen from a dj on fm radio.
'you can't always get what you want, but if try some time, you might just find
you get close enough to wave'


Joined: Nov 2007
Posts: 1,763
Diamond_AS_Kicker
Offline
Diamond_AS_Kicker
Joined: Nov 2007
Posts: 1,763
I'm excited to hear your results, Ben! Very encouraging to hear that in long-term, it DOES work!


~ Trudi: homeschooling mom to 6: 16,14,11,9,7, 6 mos


Joined: Sep 2001
Posts: 8,397
L
Lon Offline
Very_Addicted_to_AS_Kickin
Offline
Very_Addicted_to_AS_Kickin
L
Joined: Sep 2001
Posts: 8,397
Brother Ben,
It is nice to get a positive post, yours was positive, wasn't it? I hopes ya stay strong and continue to be in the battle that we call life, but I would like to say, it is always good for me to see that bearded face on my screen.
Love ya man,


I keep the New Covenant,
when I fail....I am pulled
back into place by HIM.
Joined: Apr 2002
Posts: 3,607
Offline
Joined: Apr 2002
Posts: 3,607
Ben! I've missed your posts around here.

Congrats on 5 good years.

Hugs!

Joined: Nov 2001
Posts: 18,141
Likes: 5
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,141
Likes: 5
Ben, I am so happy to hear that you are so much improved! I knew it was working for you, but hadn't realized the extent of it. You, my dear, are awesome!

If I could, I would get up from my desk and dance a happy dance on your behalf. But I cannot, as sadly, I fear they would think I had finally, and completely, lost my marbles.

Warm hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

A
Anonymous
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Great news Ben shows it can work long term.Hope it continues for many more years.
Kevin

Joined: Jan 2008
Posts: 21,346
Likes: 1
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346
Likes: 1
congrats!

i vaguely remember a similar anniversary post from last year?

looking forward to equally good news next year,

very inspirational so thank you so much for sharing



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Sep 2009
Posts: 389
B
Fifth_Degree_AS_Kicker
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Fifth_Degree_AS_Kicker
B
Joined: Sep 2009
Posts: 389
alright! glad it's working! i know that "pain in the butt all too well" and when it goes, you're so happy, and when it comes back, you just want to scream and curse! anyway, glad it's gone most of the time!
shauna


Off antibiotics and now exploring mindbody healing.
Joined: Nov 2002
Posts: 6,925
Likes: 1
Addicted_to_AS_Kickin
Offline
Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,925
Likes: 1
Ben, I am so happy for you. I have missed our conversations. Hope you had a good summer.

Pu Liki
Possi




Possi
*********************************************************

RUN WHEN YOU CAN,
WALK IF YOU HAVE TO,
CRAWL IF YOU MUST,
JUST NEVER EVER GIVE UP!



"A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS."

"A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."

Joined: Oct 2008
Posts: 843
Ninja_AS_Kicker
Offline
Ninja_AS_Kicker
Joined: Oct 2008
Posts: 843
Awesome Ben, and thanks so much for sharing this info... I copied it to my 'log'. I hope it continues to be cumulative for you!
cc

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