How My Attitude Toward Medication Has Changed
Last updated: June 2021
It’s been a little over 4 years since I was diagnosed with lupus and sent off to the pharmacy to pick up my first prescription. I spent a lot of time right after diagnosis reading extensively about lupus and the medications used to treat it. I struggled with all of the potential bad side effects and risks.
I was terrified of eye damage from Plaquenil, the increased chances of cancer with azathioprine, and pretty much everything to do with steroids. Of course, I was more scared of what would happen with untreated lupus, so I did take the meds. It wasn’t long before I realized that using medication to treat my disease was life-changing; I had much less pain and fatigue and more functionality.
Now that I know the extent to which medications can provide relief, I approach them with an entirely different attitude. Last night I did my first injection of Cimzia, a biologic medication, and I was practically jumping up and down with joy about it. (By the way, Cimzia is not necessarily a common or standard medication for people with lupus, but I am taking it because it is one of the safest medications to use during pregnancy.)
Living with lupus – and learning how to treat it – has taught me to look at medications with cautious optimism.
Why am I so excited about my new treatment?
It might be hard for some people to understand the excitement that comes along with getting to try a new treatment – especially one that requires 2 self-injections! I mean, who wants to take meds if they can avoid it? But for me, those two syringes represented hope that I would see improvement with my severe joint pain and eye inflammation.
Getting to try a new biologic medication is no small victory. Medications are out of reach for so many reasons – the doctor won’t prescribe it, insurance won’t pay for it, or some health conditions could mean it’s a bad fit. Biologic medications are very expensive and even more difficult to get covered. It’s not like people with lupus have a treatment vending machine where we can simply pick what we want to try next.
Five months ago, I had to lower my immunosuppressant medication (azathioprine) that I had been relying on for years to keep my lupus under control. One of my doctors discovered that my body doesn’t metabolize it as expected and it was putting my liver at risk – one of the very side effects I was so worried about in the beginning. Shortly after reducing my dosage, I started experiencing increased joint pain in my hands as well as eye inflammation that caused dryness, lesions, and even a corneal melt.
I really needed a new treatment option, but my doctor refused. I didn’t give up, and thankfully, another one took me more seriously. When that doctor said she would send in the script for Cimzia I felt like I had won the lottery. I felt validated, heard, and so very grateful that she didn’t dismiss my symptoms.
My current symptoms are scarier than my treatment options
When my hands and wrists ache with pain, I’m unable to even push myself up from a chair. I have lived with this pain off and on for about 6 years and I would much rather take meds than continue to suffer, despite having bad reactions to a few medications. It truly is miserable to have severe daily pain and it brings my quality of life way down. Plus, being a parent to a nearly 3-year-old (with another one on the way) has heightened my need to be functional every single day.
When my eyes became inflamed with lesions, my vision became blurry and I couldn’t drive. This caused all sorts of problems and it’s something that I absolutely don’t want to experience again. I would much rather utilize medication than live with the ravaging symptoms of lupus.
I’m not totally without fear. I still read the entire medication packet to make sure I'm aware of what to look out for and what could possibly happen. I want to be monitored very closely. However, I know that many people do just fine and see huge benefits from this biologic.
There’s no guarantee that I won’t have a bad side effect or that this medication will work for me. Nonetheless, I’m so excited for the chance to try something. After we finished my injections, my husband and I celebrated because we had opened a door to the possibility of less pain, less fatigue, and more time to enjoy life together as a family.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?