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KJ's Kineret Journal
KJ's Kineret Journal
KrissyJo@aol.com
December 4, 2001
My rheumy and I decided that the Arava and MTX combination is just too much for my immune system. Shingles and 3 infections in a 2 and a half month period is just way too many infections! Basically, my choices were to take either of those alone or try the newly
approved Kineret. I have failed enbrel, did two series of the prosorba column and am now not a canidate for remicade due to very scarred, small
veins. So Kineret it is. I leave with instructions to check with insurance and call the kineret hotline to enroll in their program.
I call my pharmacy insurance, Of course they had never heard of it and said it was not on their formulary so it would not be covered. The nice folks at the Kineret hotline offered to make some calls and see if they could help get it covered. In the meantime they would send out my starter kit.
December 6, 2001
The pharmacy insurance called me to let me know I needed to appeal to my husband's employer for coverage. They offered to help me draft any letters I might need to write. I called the number I was given and I was told my hubby had been terminated!! After we got that straightened out (Did you know if you are on hold with PepsiCo you get to hear every pepsi commercial ever made? If I heard Britney Spears sing "bop bo bop bop bop" one more time I would have screamed!) I was given another number to call, not toll free of course! This man, Ken, asks the name of the drug, I tell him and he says, "Well we don't cover appetite
suppressants!" I don't want a damn appetite suppressant!!!! I explain what the drug is and then he says, "Well why
don't we cover it then?" How in the hell am I supposed to know???? He told me he would call me after he figures out what my next step should be. Ken doesn't know it yet, but he is my new best friend. I will call him everyday until I get this taken care of!!
December 13, 2001
Ken didn't like being my best friend and turned my case over to Marty. Marty called me today to let me know that Kineret is not covered by my pharmacy insurance. DUH again! I knew that!! He is now trying to find out why, which is what I thought Ken was doing last week. He is supposed to call me tomorrow afternoon. Yeah right, I'll
believe that when I see it.
December 14, 2001
Yes, Krissy, there is a Santa Claus! My
best friend for life, Marty, called to tell me that Kineret will be a
covered drug by Wednesday! WOOOHOOOO! I have to order the drug, get my
starter kit from the hotline and be taught how to use the injection
device before I can start. I imagine all this will take a couple weeks,
but I really hope to start the New Year on a new med. I have a very good
feeling about this one! It is going to work and work well!!!
January 15, 2002
It took awhile, but I finally had my
first dose yesterday. Part of the delay was that my doctor wanted me in
a post market study so I had to wait while the study program was set up.
I was supposed to start Friday, but my shipment of drugs was LOST! LOST!
Never made it from the drug company to my doctor's office. I am
wondering if the box was marked "EXPENSIVE DRUGS AND SYRINGES"
and now there are two junkies with hives wondering why they don't have a
buzz! LOL
Kineret comes with an interesting
injection device, the Simpleject. Supposedly it makes self injection
easier, but honestly, I am not all that impressed. Seems to me it would
be easier just to inject it!
I have a slight injection site
reaction-the most common side effect. Just a little welt, no itching or
pain. More painful is the headache I've has since a few hours after my
first day-that appears to be a side effect also. I am hoping it lessens
over time, but if I have my choice between a headache and RA pain, I'll
take the headache!
They say it takes a month or two to
work, so I will keep you posted.
January 27, 2002
I an finishing up my second week on the
drug. So far no major injection site reactions, still just a little
welt. The headache is either lessening or I am just getting used to it.
It's there, but not as painful. I gave up on the Simpleject, never did
figure out what was so simple about it. I just inject like you do Enbrel
or Methotrexate. So far I haven't had a lessening of symptoms, but it's
still way to early to know if it will work.
February 12, 2002
Well, I passed the four week mark with
no results, in fact I am flaring. But I am not giving up yet. I've
talked to several people who said it didn't start working until they had
been on it for 2 months. There's still hope!!
I am now blessed with the infamous
injection site reactions. Rather strange if you ask me! 23 hours after
an injection it starts. It begins to itch and forms a silver dollar size
hive which lasts for 3-4 days. So at any given time I have 3-4 ugly
itchy bumps on my body. UGH!
March 5, 2002
After 6 weeks I am starting to notice a
little improvement. I am sleeping better, not waking up every hour. And
the morning stiffness is just a little bit less. And, although the pain
and swelling are still here, I bowled Saturday night and wasn't hurting
near as bad as I expected the next day.
Injection site reactions are much less
now. Almost no itching, just a little welt for a day or two.
So...it's not much, but at this stage
in the game I will take what I can get!
March 24, 2002
I love this drug! After 10 weeks, it's
working! My sed rate is 6...yup 6! I've had a couple REALLY good days
and my bad days are better. Things are definitely improving and I hope
they will continue to improve! I'll keep you posted.
April 30, 2002
One is the loveliest number that you'll
ever see! (You have to sing that) Why? Because that is my sed rate. ONE!
That means there is nooooo inflammation in my body! My hemoglobin is in
the high normal range-NO ANEMIA! No swelling, no signs of active
disease. Folks, I do believe I am in remission! WOOOOOO HOOOOOOO!
I was given the go ahead to start
weaning off the pred, although my RD did say if it was him, he would
wait a couple months. I think I'll wait a couple of weeks then start
VERY slowly.
This is one gimp that will be dancin'
in DC!!!
May 14, 2002
I could really get used to this
remission thing! I have basically no joint swelling and stiffness is
very mild. I am having some serious hip and ankle pain, but we've
decided that's from damage already done, not active RA. My energy level
has improved, but not to the degree I would like-but hey-I'll take what
I can get!
I have skipped the last 3 doses of
methotrexate, and haven't noticed a difference. If I am going to notice
it, I should start feeling it soon. If I make it 6 weeks off mtx then I
will begin to SLOWLY wean off the pred. My goal is to be pred and mtx
free by fall. Wish me luck!
July 28, 2002
I haven't updated this in a long time,
but I have a good excuse! Shortly after my last entry I got a little
carried away with feeling good and decided to move a ton or two of rocks
while building a new pond. I felt great so I didn't think it was a bad
thing to do. Unfortunately, while my joints felt great my muscles and
back were weak from years of RA and I managed to rupture a disc in my
back. More pain than I have ever experienced in my life! The good news
is that I had surgery three weeks ago and I am recovering very well. But
I won't be moving any rocks for awhile!!
RA wise I am still doing very well on
the Kineret. I had to stop it for a week when I had surgery, but I
didn't notice a change. I'm am still off of the methotrexate. Last week
I started to decrease the pred. Four days later my left cheek started
swelling. For some reason my salivary gland is a favorite spot of attack
for my RA. I also had a definite increase in morning stiffness. I raised
the pred back up and will wait for the swelling to subside before I try
again.
I am having no side effects from the
kineret now. I still have some burning with each injection, but it is
very mild. If I ice for 5 minutes first I barely feel it. I can honestly
say, "I love this drug!"
September 7, 2002
Well, I am still waiting for the
swelling in my glands and the morning stiffness to go away. I am not
sure if the kineret is starting to lose power or if I am having a run of
the mill flare. I guess time will tell. I've been giving some thought to
adding mtx back to the cocktail, but I am going to Mexico in November
and REALLY want to drink a serious amount of margaritas while I am
there! We'll see how things go over the next couple of weeks.
I do have to say that I am NOT
complaining. Even in the midst of this flare, I feel better than I did a
year ago. Kineret is still a miracle for me.
January 14, 2003
Long time, no type! And a lot has
happened in that time. I've been under a large amount of stress the past
couple of months. (a daughter with an eating disorder, a very sick
grandma and another back surgery for me) but the RA is still under some
control. I am flaring, but not near what I would expect with all that
has been going on. I see my RD next week and plan to ask for something
more to help get it back to where I was. Maybe just a little more pred
until the stress lets up. (it has to sooner or later, right?)
It's been one year today since I had my
first injection. One year of a drug that worked! That's the longest any
drug has worked on me and none have worked this well. I just hope it
keeps on workin'! I *still* love this drug!
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