What I Wish I'd Known Before Starting a Biologic
A few years ago, I was at my wit’s end. After being in pain for months, I ended up in the hospital for a week-long stay. I wasn’t sure what was going on with my body and I wanted answers: A diagnosis, a medication, a surgery—anything. I just wanted relief.
The diagnosis was psoriatic arthritis. As I lay in my hospital bed, I remember my rheumatologist talking to me about the risks involved with biologics. But at that point, I really wasn't in the mood to listen. She told me this drug could possibly give me relief, so I wanted it.
My parents listened intently, writing everything down and asking questions.
My parents’ biggest concern? The fact that these medications could potentially impact my reproductive organs. I was in my late 20's and still had dreams of having a family. Would taking a biologic hinder me from being a mother one day?
My biggest concern? Injecting myself. I always hated needles and wasn't exactly sure how I was going to handle giving myself a shot.
In hindsight, there are definitely things I should have asked or wish I’d known before I started my biologic. I asked my Facebook friends what they wish they’d known when they started one of these medications. Here’s what they said:
Melissa Catherine: For me, the benefits far outweigh the side effects, and I wish I had known how much they'd change my life for the better. I also wish I had known that not all of them would work for me, because the process of failing a medication was somewhat devastating.
Biologics are protein-based drugs derived from living organisms. They can be administered by injection or intravenously (IV). Each biologic works a little differently and targets specific parts of the immune system. While they all are created to help combat inflammation, some biologics go after T cells, others target TNF (tumor necrosis factor), B cells, or IL pathways.
Everyone will react to biologics differently because we each have different triggers for our inflammation. Sometimes it may take you a few tries before you find one that works for you. It can be discouraging having to try several different medications. You have to remember that you aren’t failing the medication, the medication is failing you. Work with your doctor to find the right biologic that addresses your underlying causes of inflammation.
Amberlee Nicole: I wish I'd known that I’d have to be so careful about travel and large group environments because I can catch everything...colds, flu, and other infections that can be serious.
Biologics impact your immune system, making it harder for your body to fight off foreign invaders. It’s important to regularly go to your doctors and have check-ups while you’re on biologics. Sometimes patients decide to wear face masks in large crowds to reduce their risk of infections. Make sure to talk to your doctor about taking proper precautions for your individual case.
Jaime Weinstein: I wish I'd known that there are more co-therapy meds available to stop antibody building than just methotrexate, imuran, and 6MP. I think my existence on anti-TNFs may have had a better outcome if my doctor had been more knowledgeable.
While taking biologics, your body may develop auto-antibodies which can end up reducing the effectiveness of the drug. Sometimes the best course is talking to your doctor and coming up with a combination of medications that can help control your symptoms. There are co-therapies out there that your doctor can offer you, so make sure you bring this topic up when talking to them.
The good news is, since all of the biologics work a little differently, if you do build up antibodies to one, you can always try another.
Jen Troester: I wish I'd known that giving yourself a shot is not a big deal!
I remember the mini panic attack I had whenever the doctor told me I’d have to inject myself every other week. I’ve never been one who loved needles, so the thought of it wasn’t very exciting.
But when it came down to it, doing the injections wasn’t as big of a deal as I thought it would be. It was more the hassle of having to take it out of the fridge, and make sure it warmed up before administering it. There’d be a short stinging pain that would dissipate quickly and then I was on my way.
If you ask many biologic patients they’ll have similar stories. At first they were nervous, but in the end giving yourself the injection isn’t as troublesome as you build it up to be! Just be patient with yourself and slowly ease into the idea of doing it.
Jaime Lyn Moy: I wish I'd known that the benefits far outweigh the worries of long-term side effects. If I had, we'd gotten my son Andy started on a biologic sooner. We might have avoided joint damage. (Also, Remicade uses mouse protein and my kid is allergic to mouse protein. Ended up in the ER. Who knew? Crazy!)
Putting off taking a biologic because of side-effect concerns is understandable and common, so no one should beat themself up for not starting sooner. Better late than never.
For me personally, by taking a biologic, I was able to get my psoriatic arthritis under control and into remission—so much so that I was able to get off all medication. The medication that helped me in my time of crisis was exactly what I needed.