“I have been on pretty much every biologic (injectable) that has been approved for PsA.”
It seems like a broken record. A patient has psoriasis, they begin to have joint pain and it takes a while for all the pieces of the puzzle to come together. But, this story has a great ending. After trying many different biologic options, Michelle Lewis is now managing her psoriatic arthritis and living a wonderful and fulfilling life.
Michelle Lewis had psoriasis for most of her life before seeking out medical attention when she was around 20 years old. Shortly after, she began having pain and trouble walking. Upon learning that she had psoriasis, a medical student at the hospital she had been admitted to, suggested she go and see a rheumatologist. After that it took about 4 months for Michelle to receive a diagnosis. “It was, to put it plainly, terrifying while waiting. Being told I could potentially have MS, Lupus, Lyme's disease...each possibility worse than the next.“
Finally receiving a psoriatic arthritis diagnosis, shortly before turning 22, Michelle went from living an active life to struggling to keep up with friends.
“Initially I was treated with high doses of prednisone and NSAIDS. By the time my doctor suggested Enbrel, I was so desperate for anything to really help that I was more than willing to try a biologic.”
Since then, a series of ups and downs has resulted in Michelle running through the list of approved biologics for psoriatic arthritis.
The med run-down
After her diagnoses in 2004, Michelle spent a period of time having much success on Enbrel. While on Enbrel, her pain was well controlled. “I would have breakthrough pain now and then, but I felt like it was manageable. If my pain was not tolerable, my doctor would give me a prescription for a prednisone taper or a steroid injection.”
But unfortunately in January of 2010, the stress of life began to hammer down and the realities of affording biologics began to catch up. “I had been laid off and had issues with the continuity of my insurance. Since most people don't have $3,000 sitting around in case of emergency, I had to go without it for (ball park) 2-3 months.” During that time frame, Michelle recalls having the “flare to end all fares."
Stress is a major trigger when it comes to autoimmune disease, and to make matters worse, in addition to the loss of her job Michelle had many personal stressors occurring as well. “Long story short, I was a mess. Psoriasis head to toe, pain in every joint, serious swelling in major joints, couldn't move without help. I wanted to give up and just spend the rest of my life on my mom's couch.”
Once her insurance was straightened out, Michelle’s doctor suggested that she try Humira. Prior to her insurance issues, they had talked about the option of trying a new biologic, so this seemed like the opportune time. Michelle admits that she never did quite as well on Humira as she did on Enbrel. Her pain lingered, she still had plaques that would show up and her joints were perpetually swollen.
“My psoriasis was out of control, and I was having an extreme flare. A flare isn't even the right word. I think it was worse than when I was first diagnosed. So, again, I was willing to try anything if it would help.”
Because of all of the symptoms she was still having, Michelle ended up on the maximum dose of methotrexate, ultram and plaquenil.
“I am not sure if that flare advanced my disease, or if my psoriatic arthritis was beyond the scope of Humira's powers, but I only lasted about a year on it before I was switched to Simponi. Prior to this, I had asked to go back to Enbrel. My doctor thought it best if I try a different injectable, which is how Simponi came onto the scene.”
Still not having the luck that she had hoped for, Michelle convinced her doctor to switch back to Enbrel. Her doctor agreed, but conditionally. “If I didn't improve in a year, I'd start the Remicade infusions, which she had wanted me to do instead of the Enbrel again. Needless to say, I was on Remicade starting in the summer of 2013.”
Managing her disease on Remicade for the time being, Michelle admits that it is a little inconvenient. ”It’s an infusion, one that I have to go to an infusion center for, and it takes up a good portion of the day. I'm there usually from 10 am until after 2 pm. That being said, it's typically only given every 8 weeks, so thats a plus.”
Since starting on Remicade, Michelle still has rough days, but otherwise she’s been feeling pretty well. Claiming she doesn’t prefer one over another, she did mention that she felt her best while on Enbrel. But, she also notes that since then she’s had a major exacerbation, she’s 12 years older and struggles with her weight.
“I really think we moved through the list because my lab work never seemed to improve, so my doctor was trying to find the right medication to help me the most.”
Attributing a high demand work schedule to the cause, her blood work still shows that there is much to be improved in terms of CRP and SED rate levels. Working 4 to 5, 8 hour nights a week is stressful enough for a healthy individual, let alone an autoimmune patient!
She’s currently working with her doctor to see if there is any influence over changing her work schedule to accommodate her health conditions. It’s important to balance everything in life! A high demanding work schedule can trigger a flare in a psoriatic disease patient.
What about the risks?
Many patients have concerns about the risks associated with biologics. These risks were definitely on Michelle’s mind and she realized that there was a downside to the meds. “The downside: There is always a downside. Long term use can lead to scary effects. Different lymphomas, long term liver damage, gastro side effects, all possibilities. But I'd rather take my chances and actually be able to live my life relatively pain free (or at least pain controlled) with a potential risk of side effects than be in constant pain and live in fear of what could possibly happen.”
Support through it all
Throughout Michelle’s entire journey, she’s always believed and had faith in her doctor. “I believe she truly cares and wants to help me live the best life that I can. Every time another drug was mentioned, I would read the information my doctor gave me. Initially, I would read everything I could find and I was overwhelmed by the potential side effects, research findings and so on.”
Having faith and a great support system has been vital for Michelle as well.
“Also my family and friends were always there for me. Every time I would start a new biologic, my aunt would read up on it. My mom is forever saying how she just wants me to be well and will do anything to help make that happen. My sister would carry my laundry up and down the steps for me. She even came to my first infusion appointment when I started Remicade just in case I had a reaction.”
Improvements in Michelle’s life
So after running the gamut of biologic choices, how does Michelle feel about her medicinal options? “I can't imagine ever going without either an injectable or my infusions. It’s truly the only thing that made a difference in the beginning. Systemic steroids would help, but as soon as I was off them, the pain would come right back. Opioids are only good for short term use in the most severe of cases. My goal is to eventually get to the point where I am only on an injectable or infusion with pain meds only as needed. I know that Enbrel is what made the difference early on when I was first diagnosed.”
A big piece of advice that Michelle would offer to anyone looking to start a biologic, or any medication for that matter, is to make sure to ask questions and educate yourself the best you can.
“Your doctor has a wealth of resources to help you understand without having to strike out on your own. That being said, you do have to be your own advocate. If you feel strongly that this is not the right path for you, speak up. If you do choose to take a biologic and you feel it isn't helping (after a reasonable amount of time has passed, of course), talk to your doctor.
"There may be another option, another dose, a different frequency that could help. Sometimes small adjustments make a big difference.”
Michelle realizes that medication isn’t the only piece of the puzzle as well. “If you try a few different meds and they aren't working as well as you would like, try exploring what else you can do in conjunction with your medications. Physical therapy, a change in diet, a new exercise regimen can all make a difference in how you feel. Just be sure to discuss any changes you want to make with your doctor. Sometimes they can even give you suggestions or advice on programs, foods to avoid/concentrate on or exercises to focus on.”
Biologics are not the only option for controlling your psoriatic disease, and it’s important to research and experiment with what works for you and your life. Michelle agrees that these DMARDs aren’t for everyone, but she states that she knows her life has improved dramatically since adding these medications into her life.
I’d like to end on a personal note and add that I’m so glad to have been introduced to Michelle. I met Michelle while filming HealthCentral’s Memo To Me videos and I can honestly say that she is one beautiful soul who is thriving with psoriatic disease. I admire her tenacity, her courage and her strength. Make sure to check out Michelle’s Memo To Me, and see what she wishes she could tell her younger self about living with psoriatic arthritis.