How have biologics affected my life? My convoluted answer is: They made me feel hopeful, joyous, scared, like a lab rat without a cage, and finally they gave me back my life.
I understand, it sounds all over the place, but that was exactly how biologics came into my life. First I was joyous because my doctor held biologics out as the carrot that kept me moving forward after seven years of trying and failing other treatments. “Christine, we just have to keep you going. There are new drugs coming down the research pipeline,” he said. At that time I didn’t understand, but I had hope, and hope was what kept me going. Hope and a good doctor.
So when the call came 18 years ago that the research test program for the first biologic was coming to UCLA I was hopeful and joyous. I had waited and hope had arrived. I was fine with giving up all my other arthritis medications for the hope that I would not have the placebo but rather the half dosage or the full dosage of the medication in this double blind study (meaning only the pharmaceutical company would know what patients got what dosage.) Hope and Joy filled all the vacant spots where other medications had been trying to work and failed over the past seven years. I believed this was the one medication that might work–I had to, I had run out of options! As the trial began I was positive I had the half dosage. Why? Because I felt so much better.
Then feeling scared entered the picture. Sitting in the lab rooms in a reclining chair I watched other very sick patients filling out the same scary forms I was signing. Over the past month one person died from cancer. One left the program from pain, another from pneumonia. Of course the caveat was these things could have happened to anyone, yet we had to sign papers saying we read the information and we agreed to continue. That is the kind of signing that wakes you up in the middle of the night with fear. I signed. At the time there were no other options for me.
I felt like a lab rat without a cage on every visit to UCLA. The research department was old and sterile. There were no pictures on the walls, no glossy magazines in the rooms, and very few smiles on the faces of the patients sitting in the other barcalounger chairs. Blood was taken every visit to compare with the last draw, forms stating how we felt about our health on a 1 to 10 scale filled out. And then, if all was right the locked refrigerator doors would open and we would be issued our next month of needles, sterile water and biologic. If I passed all those steps I got to go home, leaving my results locked and sealed for only the biologic manufacturing company to see. Even my doctor didn’t know my dosage.
Another scare was mid-way through the program when my hands became inflamed. I was sure I was on a half dosage because I still felt better and now with my hands involved I knew it had to be a half dosage of the biologic, placebo would have made everything inflamed and a full dosage, hopefully would have put me in remission. My hope was now invaded by my fear. If my hands were inflamed, what would be next? Could I make it through the program? I had to make it through in order to get a full dosage as soon as the trial was over. The alternative was to quit, go back on my old meds and wait until the biologic passed FDA regulations, and that could be years.
My fear continued as my hands became swollen and painful. I was right back to where I started from with meds failing me. But I couldn’t quit. If I was right and I had been on the half dosage of the biologic then the full dosage I would get as soon as the trial was finished would make me healthy. The rules were NO other meds, no aspirins, anti-inflammatory, nothing to do with arthritis. And so I stayed the course, red, swollen aching hands and all. Fear and hope fought for space in my head the rest of the trial. My doctor as usual kept dangling that carrot of hope in front of me, and as his trial lab rat I followed all the way to the end of the program.
I have always believed in attitude. I know it can’t stop pain nor disease, but it can sure help you get through the days. Positivity is far better than negativity for one’s well being. What I didn’t know at the time is positivity is far more important than I ever thought it could be.
The trial results came back and I had been on placebo for the entire nine months. Nothing, I had not one medication in my body for my RA and now I would be rewarded with the full dosage of the biologic.
Hope. Hope was back in my life. Yes, I knew some patients had not done well on the biologic, some did ok, and some had their lives back. What would I be now that I had a second chance at hope?
And that is when biologics gave me my life back. Within two weeks of medication I was pain free. PAIN FREE! The swelling in my hands went down, I could wear shoes other than orthotic filled sneakers. I had my life back.
And ever since then my message to others is never give up. I hold those research carrots over my friends, “there’s more coming down the research pipeline,” I say just like my doctor did for me. You must have hope, you must stay positive, and you must keep trying because one never knows when that new biologic or experimental medicine will come along and take you out of the research lab and back into your life.
What do biologics mean to me? EVERYTHING! For RA patients and JA children they mean hope. It may not be the first or the fourth medicine, but there is hope with every one you try.
I have been on a biologic and had my life back for the past 18 years. And to give back I have spent the last four years and plan on spending the rest of my life helping others, giving them hope.
As my good friend, Sportscaster Al Michaels said to the world and to my Christine’s JA Kids on Facebook, “Do You Believe In Miracles?”
Yes I do, and so should you.
Read Christine’s memoir Take Me Home From The Oscars about her balancing RA with her successful career in the entertainment world as a Fashion Reporter.
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