Stay tuned for the next entry!

July 21, 2000

Well, the wait continues. Still no word from the insurance company. They said it could be up to 30 days before they had a ruling. Well, we are over halfway there now, so the wait CAN'T be much longer.

In the meantime, I am miserable. My pred is up to 20 mgs trying to get some kind of relief. Just going to leave it there for 3 more days (for a total of 4) and gradually bring it back down to 10 as soon as possible.

Just after 3pm Wednesday, July 26, 2000

Just about 1/2 hr. ago, the RDs office called. They just heard from the insurance company. They APPROVED my Remicade!!!!!!! For real this time. No taking it back!

I have been feeling really bad for the last 2-3 days, and I swear I am almost feeling a placebo effect, just from the news!

I had hoped that we could start tomorrow, but that is not to be. But sometime within the next week or week and a half, I will be going in for my very first infusion.

I am so excited, I can hardly stand myself!! YIPPEE!!

July 31, 2000

I am not a happy camper. Talked to my RDs office today and found out the earliest that they will be able to start me on Remicade, will be August 17.

They start groups together. And in my group, one person is still awaiting insurance approval. And because of vacations, staffing has to be taken into account. And the very first available date is the 17th. If that individual does not receive approval by then, the next available date is the 21st.

It's bad enough that I had to wait for MY insurance company. But to have to wait for somebody else's, just doesn't seem quite fair.

I do, understand about staffing, and insurance companies. I don't like it, but I do understand.

I don't wait very well. But it looks like I am going to get some practice at it. So maybe I will get better at it, but I doubt it.

August 7, 2000

Called my RDs office today. They seem to be getting a little annoyed with me, but I don't particularly care. They said there has been no change since last week. My start date and time have still not been set. They said they will call me when they have it set up. But I am going to call them at least once a week anyway. This is starting to make me pretty angry. This run around is ridiculous!! I am sick. The treatment has been approved by my insurance company. And now I am waiting for them to fit me in or whatever. This is utterly RIDICULOUS!!

August 14, 2000

Well, it isn't good news. I just found out this morning that the company my husband works for is now reviewing my file and they apparently have the final say so, in whether or not I get Remicade. I don't know if this is going to raise their insurance premium or what.

Why is it so difficult to grasp, that, unless my PA is brought under control, then they are going to be paying big bucks down the road for joint replacements? I am well aware they don't give a damn about my pain and suffering, but surely they should be able to grasp the concept of uncontrolled arthritis=more joint replacements.

I am getting so discouraged. I am going to give this another week, and then ask to put on Arava and see if I can get any good out of that.

It just makes me want to sit down and cry.

August 21, 2000

Well, they have my hopes up again. Got unofficial word today for go ahead. So I am tentatively scheduled for one week from Thursday.
But I am not going to believe it until I have the IV in my arm.

Official word should come thru in 1-2 days. Just waiting for the paperwork to come across her desk. (Her being the lady I talked to.)

This has been such an emotional roller coaster for me. I have my hopes up, but I refuse to get excited about this. Because every time I do, they pull the rug out of under me, and the fall hurts.

So we will see what happens.

August 28, 2000

Well, it looks like it is really going to happen this time!!!! I have in my hot little hand, a copy of the official letter oking the Remicade. It looks like it is going to be Friday afternoon!
So maybe come October and O.H.I.O. and I can leave my wheelchair at home. Wouldn't THAT be something!!!

September 2, 2000

Well, I had my first infusion yesterday. FINALLY!! I arrived a bit early, and I was just sure, that someone was going to tell me, "We have been trying to reach you. You cant start today." But luckily my fears were ungrounded.
Got started right about 1pm. It starts soooooo slooooooow. And found out, according to the protocol, it is always going to take about 3 hrs for the infusion, each time. I had hoped that it would go faster as time went on, but I guess if it works, 3 or 4 hrs every couple of months is not too high a price to pay.

I woke up about 7:30 this morning. Hoped that I would be able to feel a difference. Couldn't. But it hasn't even been 24 hrs yet, so I am not really surprised.

My next infusion is Sept. 15th.

In the mean time, there is nothing much to do, but wait. I will post again as soon as I think I start to feel any changes.

September 7, 2000

Had the first of the Remicade a week ago tomorrow. And I think it is working, but I am not sure. Today, I slept for 11hrs. and I have some joints that are pretty painful, and that usually indicates a flare. But then again, I have been having tummy troubles, so I didn't take any meds yesterday except 10mgs. of prednisone. So maybe that is what I am reacting to. I just don't know.&nbsP;
I do know, that there has not been any miraculous remission yet. But I am counting on this drug working. It just has to.

September 14

Well, tomorrow is infusion 2. I am not certain if I had any positive reaction to the first infusion or not. The first couple days after, I felt better. Then it was back to the way it was. So I really think that it was all part of the usual ebb and flow of the disease. So hopefully, tomorrow signal to the start of better times down the road. Or at least I hope so.

October 5 

I have been remiss in keeping up with this journal. But I keep waiting for something dramatic to happen and it hasn't.

Had my second infusion 3 weeks ago and the follow up with my RD. I mentioned that my hands were feeling better. My RD seemed to think that was because of the Remicade. OK, so it is the Remicade. But that is the only improvement I have felt. And if that is all that is going to happen, it isn't worth the kind of money it is costing. I was due for my next infusion next week, but I am going to be attending O.H.I.O. next Friday. So the infusion will be the following Friday. Really looking forward to the get together. I can hardly wait.

But in the mean time, I keep waiting for the Remicade to DO SOMETHING.

October 21, 2000

I had infusion #3 yesterday. They gave me a big increase in the dosage. Went from 3 mg per kilo of body weight to 5 mg per kilo of body weight. 
And amazingly I feel a difference this morning. You know those little aches and pains you feel all the time? The ones that you cant call a flare, but you know are not normal? They aren't there. 

The wrists that "pinged" when I moved them in a certain way, that ache in the SI region, the neck that sang if I moved it past a certain point----they aren't there. Even the usual ache in my artificial knees is better. And I think the Remicade is the cause.
Cool, huh?

October 31, 2000

This will be my last entry in this journal. I had my last dose of Remicade 11 days ago. 7 days after that dose (which was nearly double the previous 2 doses) I began to flare right through it. I kept hoping it would subside on its own. It didn't.

I phoned my RD yesterday, and saw him today.
Initially the Remicade had brought my Sed rate and C reactive protein down to normal. We drew blood to recheck it today. I would bet large sums of money, it is no longer normal. Although not as high as it was previously, but still high enough, and not stopping there unless we can get a handle on it.

Those of you starting down this path, please dont be discouraged. Each persons journey is different. Remicade was not my miracle. It could be yours. Do not give up hope.