My Experience With Clinical Trials
Being part of a clinical trial can be stressful because sometimes it is just new drugs being tested on you. Of course, everyone ends up feeling like a “guinea pig,” but how does your body really feel in the end? Do you feel tired from being pumped with multiple drugs? Do you feel a mood change? Do you feel increased pain and fatigue? Well, this is some experience I am sure we all experienced with any type of condition but I would love to tell you about my experience being in clinical trials. Some were okay and some were just downright horrible.
My first lupus clinical trial experience
The first trial I tried included cyclobenzaprine, which is a muscle relaxant. It can treat pain and stiffness caused by muscle spasms. I tried this trial because when I retained fluid, I was taking furosemide, which is a drug to help release fluid. As I was releasing this fluid, I became very dehydrated. This caused me to have really bad muscle spasms. It was hard for me to cook, clean, bathe myself, and do things in general. I went to my doctor and they recommended cinnamon candy for the muscle spasms and a heating pad, at a point in time none of that had worked for me.
Trial side effects and lupus
So one day I decided to go to the doctor because I was catching really bad spasms in my hands and feet. My back pain was so bad that I cried all the time. I could not even bathe myself. Of course, my hands would lock up, and my husband had to help me get out of the tub and help me take a bath at times. So when I started this drug, I was supposed to read up on the side effects. The first day taking the drug, I slept all day. It literally took all the energy away from me. I felt like I did not have a life at the time because of course, sometimes lupus takes that option away from you. But for me not being able to want to get up and be productive was not me. So I sat there and became over-exhausted. It took time to get used to this drug. The trial lasted a month and I ended up getting on the drug and getting paid a $50 Visa card.
Conclusions about clinical trials
When dealing with lupus, we are so uptight and in so much pain that we do not realize how hard life can get. When you're having a muscle spasm you can not cook or clean. Some people become amazed at how your muscles can contract. During this trial, I had no issues. But I did another trial that consisted of giving blood work and by that time I was completely drained and not feeling well. I think I had so much blood withdrawn that I felt too sick and ended up spending a week in the hospital. Anything that makes me stay in the hospital too long I do not want to take anymore. I ended up only taking this after I was done doing chemotherapy.
Have you ever had to change holiday plans because of lupus?