Disclaimer: This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research.
Methotrexate, a pharmaceutical drug that was once in clinical trials, has stood the test of time over a quarter century later. It is helping me after years of trying other medications to no avail. I was diagnosed with juvenile rheumatoid arthritis 14 years ago and although conventional medication has been a blessing, alternative treatments in combination has equally been a gift.
I never personally got involved in a clinical trial, but the “trial and error” of testing out different medications sure felt like I was in one. The unknown of these drugs was the scariest part for me. These fears and stigmas attached to being test subjects or “guinea pigs” can steer people away from conventional drugs and clinical trials in general. However, Clara Health helps raise awareness of the importance of various clinical trials and matches patients with ones based on their specific needs. There guides and podcasts provide an ample amount of information for those looking for different options.
I eventually moved on to the DMARD, methotrexate which has proved to work the best in controlling my disease. A clean diet, addressing food allergies and sensitivities, exercise, and stress management have always been in my arsenal since my diagnosis. However, it has taken more than that to calm the storm raging in my body.
Before finding a drug that put me in this “low disease activity range,” “close to remission” stage I am in now, I endured much hardship. After being bed-ridden for a week in 2012 due to a flareup that took six months to recover from, I was forced to leave my job. I spiraled down the path of not being able to work a part-time or full-time job since then. Any income I have been receiving is solely my disability benefits and any consulting work I do on the side.
After undergoing a total knee replacement in 2016 and thousands of dollars in medical debt over the years, I had enough. I knew there had to be other deep rooted answers. I didn’t want to be referred to as the “sick looking girl” or “frail looking” anymore. I needed to take my power back and us patients have power to rise above the darkness into the light of healing, no matter what bracket society may try to place us in. I went into an investigation so to speak, with my alternative medicine doctors to find any missing puzzle pieces.
I was able to uncover root causes that was fueling the fire. Certain tests that looked at my gut health, nutritional deficiencies and viral and bacterial infection markers proved to be helpful. Under the supervision of my doctors I started on herbal therapy a couple years ago, which has improved my symptoms and I am still on the therapy now.
One other alternative therapy I would like to try if insurance coverage ever kicks in to pay for some or all of this very expensive treatment, is stem cell injections. It is now being offered at my rheumatologist’s office for patients that have cartilage damage from any form of arthritis. The medical data, research and trials so far on stem cell therapy have seemed very promising, so I am hopeful that this can soon turn into be one of the first line treatments for those living with autoimmune arthritis.
In the meantime though, I am very grateful for where I am now in my healing journey. Even though I have been through hell and back with various life events in regards to my health, I found that I am much stronger now in mind, body and spirit. Without methotrexate being in clinical trials and being introduced by the FDA as a drug to treat my condition, I don’t know if I would even be here writing this.
This medicine has allowed me to live pain-free for the most part and while I do have flares from time to time, I am able to do things I enjoy. While I can’t say that my various supplements, low dose prednisone and now plaquenil added into the mix aren’t helping with the management of my disease, I feel that without methotrexate my disease wouldn’t be controlled with just the former alone. I wouldn’t have been able to pursue my life purpose, go back to school or work, accomplish any dreams or goals, make a website and blog, or get involved in any advocacy, if my disease wasn’t properly controlled. I have lived that life once and it was extremely difficult. So, I am thankful for a medicine that helps me to keep on going and keep on fighting!
We are given a gift that many before us didn’t have– to live a life were our illnesses can become better controlled and we have more options to choose from now.
With clinical trials this can increase are options and provide a chance for breakthrough cures, research and even better, safer, less invasive treatments. Take a moment to live in a state of gratitude and appreciation. for those who have paved the way to give us these choices today.
Love, Joy, Peace, Happiness, Abundance, and above all else, Good Health to all of you.
xoxo,
Effie
