The Failing of Yet Another Treatment
There are many things that are frustrating about managing life with psoriasis. As much as you try to track symptoms and treat flares - full condition management is impossible. This condition is too inconsistent and loves to keep us on our itchy toes.
Since I received my COVID-19 shots, my psoriasis has been flaring - and flaring badly. It must be the antibodies and autoimmune response, my body seems to have turned against me. Months later, I find myself still in this flare unsure if it was because of the vaccine or if my treatment is failing.
After 17 years of living with psoriasis, I would bet it is the latter.
The infuriating treatment journey
It is the very thing I find most frustrating about psoriasis treatments. The hope of trying a new treatment, the "is it working?" journey, and then ultimately coming to the conclusion of failure.
I find myself currently on my seventh treatment. Two of them have not been biologics while the other five have been. To say that I am not looking forward to having yet another discussion with my rheumatologist about potentially switching to another treatment is a big understatement.
However, since I play a very pivotal part in my own health and treatment, I am not going to sit idly by as my psoriasis gets worse.
Setting realistic expectations
I started Otezla back in April of 2021. Previous to starting Otezla, I was on an IV infusion of Remicade. My rheumatologist really wanted me to be on this. I was not a fan of the idea of going to sit at a hospital to take the treatment, especially given the fact that the pandemic was in full swing.
To make matters worse, I saw absolutely no signs of improvement in my psoriasis or psoriatic arthritis symptoms. My rheumatologist was insistent about keeping me on - in her opinion - anything given by IV infusion would work far better than anything that comes out of a syringe.
I could understand her logic but if it wasn’t working, it made no sense for me to be on it. However, I did go the six months. I knew I had to give myself a realistic timeframe to track improvements - or in my case, lack of improvements.
The decision to switch treatments
Each time I went in for the infusion, I would proceed to tell her it was not working. I would tell her we needed to start thinking about switching to another treatment. It was like I was talking to the wall. She did not want to discuss it.
Do you know what finally made her start discussing it? I had to put my foot down and tell her that I would not be to get another infusion. She could write the prescription, set the appointment and then do with it what she pleased because I would not be there.
It was pitiful that it took me being that direct with her. However, it got the end result I wanted, which was to get off a medication that was not helping my psoriasis symptoms.
You are your own best advocate
It took me many years to learn to fight for myself and my health. Before then I would just sit and accept whatever the doctor suggested. Those days are long over. I am the one that lives with psoriasis. She does not. All she knows is what she has learned.
I am not saying I know everything about psoriasis but I want a collaborative effort when it comes to treating it. I deserve that and quite frankly, so do each of you. I did take joy in looking at her face when she saw me at the next appointment. She was stunned to see that Otezla was working for me.
I know we are all different and what works for one may not work for another. However, I do believe we all know our bodies and should advocate and understand our treatment options. I encourage you to find your voice and speak up. You are your own best advocate.
Has psoriasis affected your ability to sleep well?