Home Community Member Stories Carol's Remicade Journal

Carol's Remicade Journal

carol@canplat.com 

8/4/2

I am a 36-year-old female with Rheumatoid Arthritis. I do not have health insurance, and didn't expect to have access to a biologic, but was just approved for a one-year study using Remicade and Methotrexate. There is no placebo drug, and no variations in dosage. I consider myself blessed to have this opportunity.

I have my first infusion in two days, and am having pain that keeps me up at night in most joints: hands, shoulders, hips, knees, ankles, and feet. I also have inflammation in my chest wall that was verified by the rheumatologist last Friday as being an RA manifestation. I can't adequately convey how hopeful I am for positive results from the Remicade.

I had mild RA symptoms for about four years, but only went to my Dr. about it when the pain got so severe that I could no longer ignore it. I tried many diets and alternative therapies: the candida diet with supplements, high protein, wheat and dairy free, dairy free, nightshade free. The only dietary modification that helps my symptoms personally is a dairy free diet. Two different specialists have told me that avoiding meat can help as well. For me, though, I've never noticed a difference.

I'm taking MTX 10 mg weekly, Plaquenil 400 mg daily, Folic acid 2mg daily, and Mobic 7.5 mg daily. The first month or two on MTX I had fairly good results, and I was encouraged immensely. But the past 2 months have been one continuous flare, and I've become much more discouraged. I have been having a lot of trouble sleeping because of the pain. I dread going out because I hurt, and I avoid many activities. I am trying to exercise (walk) daily, because it may be painful but it helps me to stay more flexible. But my existence is being dictated by this illness, and that needs to change.

The clinic where I will have my infusions is a two-hour drive from my home, each way, so I am going to stay in a hotel after my first infusion, as per my husband's concerns. He's been wonderful considering how much a toll this is taking on him, too. I tend to withdraw when I'm hurting, and go off by myself. I know I need to change that.

I will update this journal after my first infusion. The study rheumatologist said that Remicade works better and faster than steroids, with fewer side effects. I'm hoping that my next entry will be a glowing endorsement of the miracle that is Remicade. I'm such an optimist!

My Infusion Experience

I went in and was put in a room with a recliner and a TV and VCR. Being in a study, they had me fill out questionnaires about the degree of pain and disability I was currently experiencing. First they gave me a Zyrtec and 2 Tylenol. The rheumatologist wants to pre-medicate everyone as insurance against the possibility of side effects. Next, they took my blood and put a butterfly needle in my arm. They used that same needle and hooked up an IV with saline. Then I had to wait for the nurse practitioner to come in, and she hooked up the IV bag with the Remicade. She immediately did a joint check, and made note of my tender/swollen joint count.

During the infusion they came in and took my vital signs (temp, pulse, BP) every 30 minutes. They started the drip slow during the first hour, to make sure I wouldn't have side effects. I was there for about 4.5 hours that first time, 2.5 were during the infusion. I had an hour wait before the nurse practitioner could come in, and they make you wait 1 hour after the infusion to be sure you're OK. I didn't feel anything unpleasant during the infusion, and there was no strange taste in my mouth or any other sensation.

I was very tired after the infusion, though, and hungry. I was tired for a couple of days afterward, actually. Truly exhausted. The morning after the infusion I noticed that my gait had improved and my hands looked a little less swollen. I was surprised to notice improvements so soon afterward.

8/12/2 Week 1

Well, it's been 6 days since my first infusion, and I am certainly feeling better. I would say my pain went from an 8 to a 3. I felt results by day 2, which I was happily surprised by as they told me it would be 48 to 72 hours minimum, and possibly 2 weeks. I noticed improvements in many areas. I used to hurt the whole time I was in a store, and couldn't wait to get home to take the weight off my hip joints. Now, I am able to shop much longer with little or no pain. I have my family in town and have been very busy, and my stamina has improved immensely. I had slight flu like symptoms on days 3-5, and had loose stool for a couple of days. I also noticed a
little hair loss the first couple of days, slightly more than the MTX usually causes. It's only a little extra in my brush, though, nothing noticeable on my head. I would say, overall, I've had very little as far as side effects, though. So far I love the Remicade!

Monday 8/19/2 Week 2

Tomorrow I go in for my second infusion. I had a great week for the most part, but I woke up yesterday morning in a terrible flare. It's hard going back to pain after feeling so good. I know why it happened, though. I overdid it. In the past week I've gone "boogie boarding" in the ocean, I've danced, and I've been all over town. I could never have done all that three weeks ago. I can't wait to have my second infusion tomorrow so I can start feeling good again.

9/5/2 Week 4

My second infusion went well, although I was flaring. My sed rate went from 8 to 40 in the two weeks between visits. Most certainly it was because I chose to overdo it because of feeling so good. My labs turned out to be better than they've been in a long time. My white blood count was higher, my hemoglobin and hematocrit were up, and many other values were in a more acceptable range. Nonetheless, about 6 days after my infusion I had an upper respiratory infection. Let me backtrack, first I had pleurisy from the flare (which I've had before). Then I got the upper respiratory infection. My Dr. gave me Zithromax and I was feeling good within 2 to 3 days, though. I'm glad it went away quickly.

I'm still having joint pain, but I'm able to complete daily activities more easily. I went shopping and on other errands for over 6 hours the other day! That, for me, is a miracle. My next infusion, which will complete my loading doses, is on 9/16.