Kickas.org Forums Treatments, Drugs and Alternatives Anti TNF and other biological medications six months on enbrel...

hi all,

well dog bless the encourage foundation...i've been doing enbrel now for six months...it's been a good ride...
i am so grateful that i took this plunge, although i will admit that it scares me, i don't like giving myself shots,
and i do harbour a resentment that the spondy monster ate up so much of me that enbrel is needed.

saw my consulting physician several weeks ago: blood tests most all in the ok range, a small bump in creatinines
again; esr/sed rate down to 12...i gained nine pounds ( i really am becoming the pillsbury dough-boy)...
blood pressure has gone from 120/78 to 132/84...

enbrel has slowly brought a much different AS existence to me, and a much better understanding of what's going on.
probably the biggest thing is that i walk comfortably in stride frequently, only limp a little; but i still do
the stand up/sit down/ stretch routine throughout the day; evenings are still 'difficult'

there have been days in which i find myself making coffee in the morning and saying 'where's that pain?'...
that's rare...but enbrel has done a great job turning the monster's fire down...this bit of respite has yielded
a better perspective of how my other meds help...i still take bextra( one half of a 20mg tab) about three days
a week...i take one or two tylenol#4 most every day( a part of my plan to treat pain with a med pain med, not
a Nsaid)...once a week or so I take skellexin for muscle spasms in my legs...and i am down to one 300mg Neurontin
a day...and .5mg klonopin to sleep...I am sleeping so much better...and the number of pain meds and neurontin
pills has gone way down...I also do caltrate, frolic acid, and b12...oh, and Prevacid daily.

i have not been infused with unlimited energy...but the fatigue stuff is i think more related to the
catastrophic weight loss three years ago...it's hard to exercise when you're zapped out...now that i move better
i am really looking foreward to spring to restart walking the loop at my apt complex.

my plan is to eliminate the bextra and replace it with nothing...then i can stop the prevacid...When i started
the informed med quest two years ago, my primary consideration was that however i maintained myself
i would not tolerate the stasis of taking one pill and then another to counteract the first...nsaid/prevacid;
mtx/frolic acid...

i do worry about infection, treat every little cut, nick and burn carefully...and try to avoid sources of danger.

i do hope they'll give me free enbrel next year, but at the very least when my year is up i can try new meds
without the constant ulcer worry and no Nsaids or steroids in the system for some time...clean.
All in all, it's working, worth the effort, and the past three months or so are probably the best in thirty years.
just my four pence,
best
aloha Ben

Excellent news, , and a good plan. I try to reduce my amount of meds just to what I can get by with.

Way to go, Ben,

If the past three months are the best in thirty years, I'd say that Enbrel is definitely worth the effort.

Your four pence was good value for $$...

Have a good weekend,
Cat

Hey Ben,
So great to hear it's going well. Listening to yours and others' enbrel stories, it amazes me that one drug can have such a difference in peoples' lives (mine included).
I'm sure you're a great "needle jockey" now, to borrow your terminology! I'm still getting there. haha
Here's hoping you're covered for enbrel for years and years to come!
Take care!!

Aloha Ben:

I am so very happy for you, you deserve to feel better after all these years. I can't even imagine living as long as you have with the disease without the Enbrel and I hope you can continue it.

Shari

Hi to all,

I came across this abstract dealing with Enbrel & AS, in Ann Rheum Dis. 2005 Mar 18; [Epub ahead of print] :

Magnetic resonance imaging of the spine and the sacroiliac joints in ankylosing spondylitis before and during therapy with etanercept.

Rudwaleit M, Baraliakos X, Listing J, Brandt J, Sieper J, Braun J.
Rheumatology, Charite Campus Benjamin Franklin, Berlin, Germany.

BACKGROUND: Etanercept has shown definite clinical efficacy in patients with active ankylosing spondylitis (AS), while its effect on spinal inflammation visualized by magnetic resonance imaging (MRI) is less clear. OBJECTIVE: To assess the changes of inflammatory lesions in the spine and the sacroiliac (SI) joints as detected by MRI in patients with AS and undifferentiated spondyloarthritis (uSpA) with predominant axial symptoms during treatment with etanercept.

METHODS: MRI of the spine and/or the SI joints of patients with active AS or axial uSpA was performed at baseline (TP0, n=25), after 6 weeks (end of placebo- controlled phase, TP1, n=20) and after 24 weeks of continuous treatment with etanercept (TP2, n=12). T1- weighted spin echo pre -(T1), post-gadolinium (T1/Gd- DTPA) and short tau inversion recovery (STIR) MRI sequences were used to assess chronic and active spinal lesions using the scoring system ASspiMRI. Active and chronic SI lesions were assessed by using a simple scoring system.

RESULTS: By use of the STIR sequence, definite STIR sequence, significant regression of spinal inflammation was already seen already after 6 weeks in the patients treated with etanercept (mean (SD) 11.2 (13.8) at TP0 vs. 6.8 (7.9) at TP1; p=0.023) but not in patients treated with placebo. Continuous treatment with etanercept for 24 weeks resulted in a 69% reduction of active spinal changes (p=0.012). When using the T1/Gd- DTPA sequences the scores gave similar results. There was only a trend for a decrease of active inflammatory lesions of the SI joints.

CONCLUSIONS: Etanercept treatment in patients with active AS and uSpA leads to regression of active inflammatory lesions of the spine as depicted by MRI. The potential role of etanercept on deceleration of chronic spinal changes needs further study.

----------------
Cat

XO Cat, aloha

my new rheumy ( #5) challenged me to ask the enbrel folks for free stuff...he said he'd write the script, if i got
approved, had my teeth pulled and continued to see my consulting physician for semi-regular blood tests.
( the teeth were an infection in restive eruption...so they had to be done.) IF i hadn't been approved for
the enbrel, then i'd be stuck on methadone or the fentanyl patch as my situation was not tenable as it was.

some one had an article, JC i think, talking about restoration of bone mass in the spine with enbrel,
well my consulting physician is calling me in for a six month retest of bone mass...it doesn't confuse me,
but the social security problem created a five doctor support staff for me...NOW, i know who to
ask for what sort of help, and i think i'm being well taken care of...and i think i've gotten better at the asking.
best to you, thanks
a B

Hey Ben,Im glad that the juice is working for ya ..I hear ya on the great feeling of waking up and not feeling any pain strange huh....Most people dont realize that we are in pain most of the time not just once in a while .But im happy its doing a job for ya !!Steve

Ben,

So nice to see you doing so well on Enbrel...My BP has also gone up since Enbrel...and I have developed allergies since I've been on it...but I find it a small price to pay for the great relief. I hope you continue to feel well!

Steve, great post, always great to see you riding a wave!!!

Ellyn