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Ken's Remicade Journal

akers@chesco.com 

November 15, 2000

Having failed Azulfidine (sulfasalizine) and more recently Arava (infliximab) for treatment of my Rheumatoid Arthritis, my Rheumatologist recommended I take the next step and try either Remicade or Enbrel. He suggested Remicade as the first option. My wife checked with the insurance department where she works, since I am covered under her plan (AETNA US Healthcare), and after they checked with the insurance company, she was told the treatment would not be covered under the plan we have. I then called AETNA the next day and got a "song and dance" that the treatment was "kinda experimental" (the idiots actual words) and so it would not be covered. I told them that I have failed everything else and my Rheumatologist recommended I try Remicade. That didn't seem to cut any ice and I was told "good luck". I decided to let myself cool off for a few days and then try "Plan B".
Plan B: I called my Rheumatologist and explained the situation. "They're idiots you know" was his first reaction. He also told me that they (AETNA) would indeed cover the treatments since he has several patients already undergoing Remicade Infusion and most have the same coverage I have. He said he would contact the insurance company and speak with them. PRESTO CHANGO, I received a call from he Doctors office this morning saying the treatments have been approved and that I should call the Outpatient Infusion Center at the hospital and set up the schedule. I called them this morning and they were expecting my call. The first treatment will take place on Nov. 22nd, with the second treatment two weeks after that and the third 6 weeks after the second, and then at 8 week intervals for a total of 8 treatments. I'll keep ya all posted as to how things go.

November 22, 2000

I had my 1st Remicade Infusion this morning at 9:00AM. It went very well. I was very apprehensive about this treatment owing to all the side effects I have heard about. It's a little after 4:00PM and I have not had as much as a headache. Got my eyes crossed! The session took 3 hours which included one hour of preparation by the infusion nurse.

First order of business was to advise me of what some of the side effects could be. Then she called the hospital pharmacy and ordered the "brew" which was delivered in about 20 minutes. Meanwhile, I was given two Tylenol tablets to ward off the impending headache which she said most all the patients get within a few minutes of beginning the infusion. I didn't experience a headache. Maybe the Tylenol worked, or maybe I just didn't get a headache in the first place! Next, she needed my medical history and asked what medications I was taking at the moment. Then she took my vital signs. Pulse and BP were a little on the high side but within normal range. "Nervous" she asked. I was. I didn't even feel the "stick", this nurse is a keeper! She got it the very first try. "Good veins" she said. The brew was finally hung and the process began. Vitals were taken every 15 minutes for the first hour. After the first 15 minutes, pulse and BP were normal and remained that way throughout the procedure.

I was the only customer she had today, so we sat and just talked throughout entire session. She explained that she has been doing the Remicade infusions for about 9 months. The nurse said she was trained by the manufacture on how to do the infusions: start the drip very slowly at first and then increase the drip rate to very fast at the end of the two hour session. She said the first few patients she tried this on, all became very nauseated and experienced headaches by the end of the session. Since that time, she has been keeping the drip rate steady throughout the sessions and none of her patients experienced any more discomfort.

My next session is in two weeks. More at that time.

December 7, 2000

I had my second Remicade Infusion this morning (Dec. 7), it was supposed to be yesterday morning but the hospital called me Tuesday afternoon and said the medication had not arrived yet and was scheduled to be delivered Wednesday afternoon. So we put the treatment off until this morning.

I do believe the 1st treatmeent has kicked in (knocking on my wooden head) because for the past week I have had some "ambition" to do some things I have been putting off for what seems forever, because I just did not feel like it. I even feel like eating meals now. I really had no appetite to speak of, and meals were just ho hum, even with my favorite foods. The benifit of this was I lost a few pounds. My hands are still stiff as leather in the morning and I have to pry them open and push them flat on a flat surface to stretch them out, then soak them in a sink full of warm water for a few minutes until I can get them moving. I have less overall pain now I believe. By the end of the day, my hands were really sore, but over the past week, it seems the pain is much less than it has been. I did have my regular RD visit yesterday afternoon, and he seemed pleased with my progress. He commented that my hands looked better (less puffy) and I agree. My knuckles ARE smaller!

Hopefully, this improvement will continue. I had to stop working my regular job 14 months ago. At this moment I almost feel like I would like to go back to the old grind .... but I'll keep ya posted on that!

Next treatment in 6 weeks (January 17, 2001).

January 3, 2001

I had my 3rd Remicade infusion this morning. Everything went well, no problems whatever. This completes the "loading" doses as they are called. The next infusions will be at 8 week intervals and they are called "maintenance" doses. My next is scheduled for February 28th. I have to tell you, I have felt super since the second infusion 4 weeks ago. I am literally a new man. I haven't felt this good in 5 years and my energy level is right through the roof. I have no pain .... NO PAIN .... whatever and no swelling either. I have also stopped ALL of my other medications. I still have a little stiffness in my fingers when I first get up in the morning, but it's gone in about a half hour. I will probably be coming out of "retirement" in a few week as I job hunting right now. I'm not planning on going to go back to what I was doing (driving 2 1/2 hours a day and working 60 hours a week)! Looking for something part time and local. I hope this feeling good is not just a "honeymoon" like the other drugs were. I'll keep you posted! Happy New Year!

March 16, 2001

I am very late with this report, and I have a feeling this may be my
next to the last entry in my Remicade Journal. I had my 4th Remicade
infusion on February 28th. I really needed it too. Four weeks into infusion
number 3, the effects of the Remicade began to fade very rapidly and by the
5th week many of my joints were swollen and I was in a lot of pain. I saw
my RD that week and he put me back on Prednisone, 5mg/day, and decided to
"up" the dosage of the next infusion by 25% from the normal 3mg per kg of
body weight to 4 mg. in hopes it last the full 8 weeks. He also found that
I had a sinus infection and it needed to be cleared up before any more
infusions could be done. All I had to do was struggle through the next
three weeks!

February 28th finally arrived and needless to say I was there sitting
in my "favorite" infusion chair by the window long before the nurse came in
with my sleeve already rolled up. I was ready! After the usual temprature
and blood pressure taking, she pronounced we "well" and called the hospital
pharmacy and ordered the increased dosage of Remicade to be prepared. They don't prepare the Remicade in advance just in case your vitals are not good that day .... tooooo expensive to waste. About 30 minutes later the
Remicade was delivered and we began the infusion at the normal drip rate.
Within 30 minutes my blood pressure shot way up, the nurse didn't say how
"up" it went but it was enough for her to stop the drip. About 30 minutes
later my BP was back down to where it should be and she re-started the
drip, but more slowly this time. Within about 45 minutes after she
re-started the drip I began to itch all over. It began in my feet and
seemed to work its way up my body till I could feel it in my hands and
arms. There were no welts or hives but I sure was dancing in my chair! The
nurse stopped the drip once again for another 30 minutes and resumed it
again at an even sloooower rate. And somewhere along the way I developed a
severe headache. 

I finally got out of there after 5 hours as opposed to the usual 3
hours it normally takes. But the side effects weren't over yet. Once I got
home, a short 10 minute trip, I realized I had a severe backache. Another
side effect! Let me say, up until this treatment, I have not had any side
effects from Remicade whatever. Whithin 24 hours of the treatment, I was
feeling "fit as a fiddle" again. All the swelling and pain had disappeared.
I was well again! This only lasted for a week this time, even with the
increased dosage. I feel the Remicade has stopped working for me, like all
the other drugs I have tried, i.e. the "honeymoon" is over. I see my RD on
March 28th. I have a feeling I have had my last Remicade treatment. 

To be continued ........ 

Ken's Journal will remained unfinished, Ken died unexpectedly of a heart attack shortly after his last entry. He is deeply missed by everyone involved with Arthritis Insight.