((((((((((((((((((kelly)))))))))))))))  dang!  after all that, i think you
deserve 3 days  (heck, 3 months is more like it) of bliss over christmas!!!
i hope you have a totally stress-free and pain-free time, kelly!

kate
(sounds like you'll only be about 15 to 20 miles from where i live.  maybe,
i'll catch ya next time you're in town, if you're willing, cuz christmas is
for family.)

Well it seems an update is probably due but I was desperately trying not to
do it. If Diane is out there - hi Di.  I think I owe you a phone call but
not sure where to send it to. hope you are still due to be sprung by
Christmas - praying for that.

Can't remember where the saga of my life ended but we are now doing Orencia
first, then if it fails moving to rituxan.  This is because I am RA negative
and despite the active state of my RA apparently the drugs must have been
working a tiny bit or perhaps because of being on the prednisone all this
time as well but I have no erosions in my feet and hands (swan necking and
tendon problems but no erosions).  Apparently they like to save the rituxan
for RA positive people and people with erosions because it works better on
them. My RD still would rather do rituxan but because the other opinion he
had to get in order to get the infusion for me was from another good RD and
that is on file, he doesn't feel he can just bypass her recommendations in
case there was a problem (especially after all the hoopla last year with
enbrel).

So we have had to start the process over again.  BMS (the drug company the
manufactures orencia or abatacept) seems a little slow on the uptake and it
has taken a bit to figure out how to get the med, how to start the
compassionate assistance program (my provincial med will not cover it and
neither will my extended because the provincial med program won't and it
will be about $24,000 Canadian for the med a year - 26,000 for the first
year), who will do the infusions etc.  This process has taken approximately
a month and I now will start the process of filling out forms etc.  The
review committee will meet sometime in the next 2 weeks to discuss the
assistance.  I am so sick of this.  I have written ever politician alive I
swear and no longer have the patience.  Now the drug company. Critical
illnesses are the pits!

I have gotten away for a couple of weekends by upping my prednisone to 15 mg
a day.  I am so sick of being up and about for only 1 hour or so a day of
function - my brain just doesn't work welll through the pain.  Other than
that we have boosted the prednisone to 12.5 mg a day regularly which my rd
hates but sees no choice right now.  The keppra we have doubled to try to
get a handle on the neurological pain caused by the enbrel and we have
switched from the lyrica to gabapentin to try to correct some of the blurry
eye.  Of course the fatique caused by the gaba is restricting my driving to
morning only.  Pain meds have tripled which goes against my grain but can't
be helped.

Anyhow going to Seattle come hell or high water to spend Christmas.  Have
the hotel booked and am just damn well going to spend it with my family and
my 4 year old nephew.  It is going to be a lovely holiday - stress free.
Pat will drive, I will take whatever it takes in the way of meds to get me
through, the scooter will be used and we have a hotel booked with a double
jacuzzi tub so I can get in an out of it and have a bath.  3 days of bliss.

They figure I might start the med infusions in January because of course it
is the christmas Season and people are off so things take longer, yada, yada
yada.
Then maybe in 3 weeks it might start to work.  If it doesn't work in 3
months they will take me off of it and start Rituxan.

We did take the house off the market for Christmas and to give me a break.
It will go back up February 1st  - the house we wanted to buy is still not
sold but is off the market as well.  So maybe eventually things will work
out.  We need to sell the house to help pay for meds, the scooter etc.  We
have been taking out of retirement savings.  But the health is more
important.

Anyhow have received a couple of cards from people and want to say thank
you.  My hands are bad and I obviously did not do them this year so really
want you to know how special they have been.  I read the group most of the
time and am still here - still smiling and trying to get through the day
without pissing off too many people with my pain moods.  All in all doing
okay but getting tired.  It has been a long 14 months.

My prayers and thoughts to those who need it (and yes I do know who you are
even if I have missed emailing you.)  Gwen so glad to hear things are
working out a bit better.  Melinda - one day I would still like an address I
could get something to you at.  It is in an envelope on my desk and is a
pass it on type of thing for people who have had a bad day. Seems to me you
could use that book now - no it is not gloomy - you know I wouldn't do that.
It is a positive thing!

Take care everyone,
Kelly in BC

Hi Kelly,
There is light at the end of the tunnel somewhere for you Kelly. It
has been a very long tunnel though, and it about time you made it
through. I hope that the orencia is the answer.
I will keep everything crossed.

Have a great Christmas.
    Rose   @}>->--
    Being educated means that rather than fearing the unknown, one seeks to understand it. RB

    Please remove "Ima" to reply.

Kelly, will be praying the Orencia will work and you will get relief very
soon.  Sorry you're being bombarded with so much paper work when you just
don't feel like being bothered with it.  Holidays are nice but they do get
in the way of medical procedures and other things that are important to us.
But hope your Christmas with your family and your nephew will be
onderful  -- maybe just what the doctor ordered for a new start in the new
year.  Let's count on it.
Gwen

Kelly, glad to get your update and that you're getting started on the
orencia. i hope it helps. the paperwork sounds like the pits.

glad you're planning on making the trip to seattle and i hope your
holidays are as enjoyable as they can be.

hugs,

diane

Kelly,

I sure wish some treatment would work miracles for you. I feel for you
having to had to endure this for so long.

I can imagine the frustration is something else when you can only be up and
about for 1 hour. I sure hope you get the right dose to work with the pred
and it does wonders for you.

I hope your trip to Seattle goes well and you loads of fun. You deserve it.

{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{{Kelly}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}},

you are hangin' tough kiddo. I didn't realize the severity and
progression had been so bad this last year. sorry i have'nt been more
supportive. i will try to do better. You shouldn't worry about the
higher dose needed for the pain meds. thats pretty normal in our
business and it will stabilize. there is no such thing as too high a
dosage because with opiods everybody has a unique tolerance level. what
is important is to reduce that pain level and do not try to tough it
out. the good news is no severe erosion yet and one of the drugs is
gonna work which will let you taper the pred and the pain meds. this is
going to be a turn-around year for you. i can hear it in the cold
canadian air that is starting to move thru the desert down here. you
enjoy your holiday. you do deserve some long luxurious jacuzzi time.

johnie