Home Community Member Stories 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!