Untreated rheumatoid arthritis can carry risks. But finding a medication that works for you isn’t always simple — from side effects, allergies, and insurance hurdles.
When I was first diagnosed with rheumatoid arthritis (RA), I had no idea that finding the right medication would be so complicated. It has felt like a rollercoaster of emotions.
Whenever I start a new medication to treat my RA, I am filled with both hope and trepidation.
Will my body be able to tolerate this medication?
What about side effects?
Will this be the medication that finally helps me and maybe even puts me into remission?
My journey began with one of the most commonly prescribed medications used to treat RA: methotrexate.
Methotrexate is known as a disease-modifying antirheumatic drug (DMARD). These drugs can help relieve symptoms and also slow the progression of damage caused by RA.
I opted for methotrexate injections because I had read that oral tablets could cause stomach upset and I already struggle with digestive issues.
When I went to pick up the prescription, it was hard not to feel fearful at the long list of side effects and daunting warnings. After about four injections, I began to experience itchiness all over my body, often referred to as pruritus. I called my rheumatologist’s office and was advised to immediately stop the medication.
At my next appointment, my doctor told me that I had experienced an allergic reaction to methotrexate and that we would have to try a new approach to treatment. He wanted me to try a biologic medication.
Unlike older DMARDs such as methotrexate, biologics are DMARDs made using biotechnology. They’re made to act like natural proteins in your immune system.
I was prescribed Enbrel, but I ran into a new hurdle — the medication was rejected by my insurance. My insurance company gave me a few other options they would cover, so we went with a biologic called Cimzia.
Cimzia came in two preloaded syringes. The injections would sting as the medication was being administered, but it was tolerable. After a few months of injections, I finally began to notice some improvement.
I hadn’t experienced any initial side effects, but I was beginning to notice hair loss. When I would wash my hair, it would come out by the handful. I ignored it at first because I was finally experiencing some relief from the daily deluge of RA pain and fatigue.
But the hair loss continued — to the point where even my family members noticed. At my next rheumatology appointment, I mentioned the hair loss to my doctor. He said that several of his patients taking Cimzia had also experienced this side effect.
He decided to switch me to a different biologic that worked the same way but was not known to cause hair loss.
My newest medication was Humira, and I approached the first injection with cautious optimism. But it took quite an unexpected turn.
After a few injections, I took a trip to Hawaii. When I returned, I developed a skin boil that became infected and had to be drained. As this developed quite close to my eyes, I was also prescribed a round of antibiotics.
It’s possible to have skin-related side effects from taking Humira, but most are usually mild. Sadly for me, this skin infection was only the first of many. After having a skin sample sent for testing, I discovered that it tested positive for MRSA — a type of staph infection that is resistant to many antibiotics.
I was prescribed one of the few antibiotics used to treat MRSA, a medication that contains sulfa. After taking a few pills, I broke out in extremely itchy hives that covered me from head to toe. I was having an allergic reaction to the antibiotic.
At this point, I was exhausted. I didn’t know what had caused this continual torrent of side effects, reactions, and symptoms. I was taking medications on top of medications to try and ease the side effects and reactions of others. I felt I had no other choice than to change something.
I decided to take a break from my biologic to see if the skin infections would stop. They did. It’s been several months now, and I went from having one skin infection to another to no longer having them at all.
It was a relief at first, but I am experiencing more and more RA disease activity. And I feel like I have no good options left.
We live in a society that expects medications to treat an illness with few complications.
When I was first diagnosed, I was told about treatment options but not about the side effects or individual lived experiences.
No one prepared me for this medication journey.
I was recently part of an RA advisory board where many patients complained about a lack of transparency regarding medications. Patients expressed concern that rheumatologists don’t always warn patients that medications may not be effective, or may only help for a period of time.
For some people, a medication such as a biologic can become less effective over months or years, as a person’s immune system develops antibodies to the drug. It can even mean relapsing after obtaining RA remission.
This doesn’t mean that these medications don’t have value. They can help with symptoms and even slow disease progression. When one medication stops working, a patient can change to another.
But this is not always expressed to patients when they’re first starting a medication. So it can feel really disheartening when a medication doesn’t work, or it stops working.
The expectation that medications should work only leads to thinking there is something wrong with your own body. I know I felt defeated — as if I was the problem.
To remind myself that I’m not the problem, I’ve developed my own mantra. I like to think of starting a new medication as “dating” it.
When I am fearful about starting a new medication, I remind myself that I don’t have to be married to it.
If I experience an allergic reaction or intolerable side effects, I can talk with my doctor about stopping or switching to another medication.
This has helped me navigate the complicated emotions I feel whenever I start a new medication.
My RA medication journey has been a rollercoaster of emotions — hopeful anticipation, anxiety about potential side effects, relief when RA symptoms would lessen, and dismay when I would have to discontinue treatment.
Untreated RA carries many risks, which are always at the forefront of my mind. But I try to give myself grace and kindness, remembering that medications don’t work for all.
I am also aware that there are many lifestyle changes and other remedies that can help me manage this disease.
I try to embrace all modes of treatment. And I remain hopeful that I will find a medication that can help slow the progression of my disease.
Medically reviewed on January 26, 2022
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