Most of the questions are: "if it was working well for you, why did you go off of it?" It's a hard thing to explain but I'll do my best. Some people say that Remicade is a "wonder drug" and has been the best decision for them. For me, it's a little different.
Let's start from the beginning . . .
When I started the infusions I was 17. Or maybe I was 18. I don't remember. I had been on Enbrel for what seemed like 50 years and it had worked great on all my joints except my jaw. Some serious stuff was going on in there, and the situation wasn't getting better. I was still going to Children's Hospital at the time and my rheumatologist suggested Remicade.
Remember this bad boy?
At first, the idea of never having to give myself shots again was brilliant. I was the happiest girl in the world when I heard that. Yeah, I'd have to go to the hospital every four weeks to have an IV of medicine, but who cares? It wasn't ME that had to deal with those needles anymore!
My first infusion was done in Wenatchee, where I was still living with my parents. I was scared. I didn't know what to expect. My rheumatologist might have explained it to me, but all I could think about was throwing away that big ugly red syringe disposer box.
I was checked in to the outpatient area of the hospital. It took FOREVER to get the medicine started. I had to actually be sitting in the room with the nurse before she would order the medicine, and the pharmacist usually took his sweet time mixing it up. But whatever. While I waited, they started the IV, which sucked but whatcha gonna do? I had to have blood drawn for blood work, which was a bummer too. That only had to happen every other time, though.
Looks like I'm just chillin' in bed, checking out my credit cards.
Not sure what I'm doing with my wallet, but I'm gettin' that IV.
Once the medicine was hooked up I was stuck to it for . . . somewhere between 4-6 hours. Don't ask me why it took so long. I have no idea.
I usually fell asleep. I brought books with me and my lap top every now and then. But sleeping was what my body wanted to do and I didn't fight it.
The one wonderful thing about having infusions done at this hospital was that they would bring me lunch! Every day I ordered chicken strips and fries because, well, that was the only food item I wasn't afraid of at the time. (I remember looking at the order form when the food was brought to me and instead of just plain ol' ketchup, I was given "ketchup soufflé". Fancy.)
My dad would have to come pick me up those first few months. I was always knocked out by the time I was done. Energy was low. I have no idea why. Maybe it was the way my body reacted to the medicine. Maybe it was because I had to lay in a bed for 6 hours. I guess we'll never know.
Eventually I moved away to go to school. That's when I met Doc Wiz. And also when I met Angela, the nurse in his office. Angela was specifically the "infusion nurse". She was in charge of doing the infusions for all the RA patients. Instead of sending me to have the infusions at the big hospital in town, they had a room in their office dedicated to giving these medicines. It was a whole new world.
But wait . . . where's my ketchup soufflé?
No chicken strips. But I did get a 100 calorie pack of crackers. (I admit, I felt like a snob that first time, wondering why I wasn't getting warm blankets and a bed to lay down on. Oh my. Who the hell do I think I am? hahaha)
Anyway, though it was an adjustment, I got real used to this whole system. It only took 2 hours. Max. And I got to know Angela, who turned into one of my favorite people. Not only was she a pro at starting infusions (never a bruise or a second poke!) she was one of those people that always made my day. She was so funny and fun to chat with. I saw her so often that we learned so much about each other. Today, the only thing I miss about Remicade is Angela!
When we moved to Utah, I kept my doctor but had to have infusions down there unfortunately. And it was like going back to the original infusion situation. But the hospital was much different. The hospital was huge. HUGE. It had valet for crying out loud! I had my infusions in the cancer center, which I hated. It was a big change from the little office I used to go to. I dealt with a number of different nurses . . . and often had nurses who didn't seem to be very good at starting IVs. I also was depressed most of the time I was there because . . . well, it wasn't exactly the happiest place on earth.
In that year I noticed more swelling than usual. When I thought my RA was under control, it turned into surprising swollen joints and pain. That right knee was giving me trouble. And shockingly, the left side of my jaw had a few moments of it's own. I found myself having to take Prednisone more often than usual.
After a few months, there was an issue with my insurance company. In this time period I got married and insurance companies changed. Let's just say medical bills piled up and that Remicade isn't cheap.
Between the monetary issue and my unhappiness with pain and swelling, I needed a break.
So I took one . . .
I decided to quit cold turkey.
This is not something I recommend, FYI.
I booked a flight to visit Doc Wiz. He might want to know what I was up to.
I was so nervous that he would sit there and say "What the hell were you thinking? That's the stupidest idea ever. You go back on that Remicade right now!"
Luckily, he did not react that way. He was actually 100% supportive. Laughing, knowing my personality and that I would just stop something when I didn't like it anymore, he let me do what I felt I needed to do.
I wanted to give my body a break from all the medicine. I had been on Remicade for five years, and other arthritis drugs for years before that. Something about cleansing my body of medicine was so rejuvenating. Time to re-boot!
I also felt like I was taking back control over my life and my body. So much of what happened with the medicine, and what was going on in my life at the time, made me feel completely helpless. I was out of control, I needed to get a handle on things. I needed to feel like I was making my own decisions and getting back on track. I am so glad I did and I am so lucky that I have a doctor who let me do so.
For six months I was medicine free (except for medicine to handle pain in my jaw). I was in remission! When I was first diagnosed I was told that there is an 85% chance that children who are diagnosed with Juvenile Rheumatoid Arthritis will "grow out of it" by the time they are in their early to mid-twenties. Maybe that happened to me! Maybe all these medicines weren't even necessary!
Oh yeah! I was feelin' good! (First birdie EVER! Feeling very good!)
But six months after I had taken my "break" from Remicade, it started up again.
We moved back to Washington and at first I thought the swelling was due to the stress of moving, and the transition of jobs Mitch was going through. Our life was in limbo for a few months, heck that would make anyone stress, and stress was my #1 arthritis trigger.
But it stuck around. My doc had me try prednisone, methylprednisolone, steroid injections, but it was all only a temporary fix.
I had to go back on something.
Again, I was worried about the reaction I would get from my doctor. Would he tell me I HAD to go back on Remicade, even though I really didn't want to? Would he tell me I was crazy for going off of it in the first place?
I remember talking to Carol on the phone about my worries. She gave me a very important little tidbit of advice/information that will stick with me forever: Your doctor is there to help you live the life you want to live. Your rheumatologist's job is to help you manage your arthritis in a way that fits your lifestyle. If you need aggressive treatment, you should get it. If you need to take it a step back, that should happen. Your doctor should never make you do something you are uncomfortable or unhappy with. If he or she does, then it's "goodbye rheumy" and on to a new doc.
Before I went to see him I practiced my arguments for not going back on Remicade. I had it all planned out. What I was going to say. How I was going to say it.
"Listen Doc, I've got news for you . . . "
It turned out I didn't have to say any of it. All I said was . . .
"I don't want to go back on Remicade."
And he said . . .
And that was that.
We then discussed my options and decided that I would give Enbrel another try.
And here we are now! I'm doing pretty well! Nothing too dramatic and I have an appointment coming up in the next month to see good ol' Doc Wiz to tell him how well I'm doing.
I wanted to share this story with you all because it's so important to me that people know that they can have control over their own treatment. You should never feel that you have no say in what is happening in your life. Especially when it comes to your health. I admit, going to see the doctor can be a stressful and overwhelming event. They package it that way. But it doesn't have to be, as long as you know what you want and are open and upfront about it. Make your doctor get to know you and what your needs are.
I have to state again that I am in no way recommending that you make the crazy decision I made to give up your medicine cold-turkey. I'm a crazy fool, I know that. I believe it is important for you to talk about your feelings before you make any rash decisions.
. . . But sometimes you just gotta do something crazy to get anything accomplished in this world.
"Hey Doc Wiz, what if I move to Ireland?"
". . . I make house-calls."