Treatment Journey: Part 2
Last updated: March 2023
Welcome back to my treatment journey. If you haven’t read part 1, you can find it here.
We are all so different in what kinds of medications work and which ones do not. Through this series, I’m letting you in on what has worked for me and what hasn’t. My doctor and I are still trying to find the best combination of meds, and are working together to get my hives manageable. If you have any questions about any of these medications, be sure to talk to your doctor or health care provider.
Because my chronic hives are so severe, causing rashes and facial swelling, my doctor quickly recommended I try Xolair shots. I was very hesitant to try it because I was already on another, a similar, medication called Dupixent to help control my severe asthma, and was not excited at the thought of stopping it and waiting for the Xolair to kick in. My pulmonologist and I had worked very hard to get my asthma under control, and it scared me to make such a big change.
I finally took the plunge at the beginning of 2021. I stopped the Dupixent and was quickly approved for Xolair. I have to say that I didn’t really enjoy the experience, for many reasons. Because Covid was still running rampant, there were many hoops to jump through just to get to injection day; traveling to the hospital to get a covid test 2 days prior to the injection, being quarantined until the injection, then traveling back to the hospital to get the injection and waiting for two hours for observation. It was a hassle. So after a month or two, I decided to stop the Xolair and switch back to Dupixent.
I had to fight my insurance for many months to get the Dupixent reapproved, but I finally did and was so happy to have it back. My asthma was better controlled and my hives seemed better too. But that only lasted for so long.
Last fall my hives flared again and my allergist suggested that I give Xolair another shot (get it? Shot?). Anyway…but this time he wanted to add the Xolair on top of the Dupixent. With Covid restrictions finally letting up, it was easier to get to the hospital for the injections, and after a few visits, I only had to be observed for half an hour.
But as the months went on, I just didn’t feel like the Xolair was making much of a difference. I was still super itchy most of the time and my face was still getting puffy. I ultimately made the decision to stop doing the Xolair shots because I didn’t feel like it was making much of a difference for me. While Xolair works very well for many people, I frankly didn’t notice any change in my symptom control and could not justify continuing it. And I was right, stopping the Xolair made no difference in how well my symptoms were controlled.
My symptoms began to rage a few months later. I had failed Xolair twice, so that was out of the question. But where to now? I had still been on Dupixent during this time, and it continued to control my asthma and some of my chronic hive symptoms. I discussed increasing the dose of my Dupixent with my allergist and pulmonologist, as there was room for a dose increase, and both doctors felt like it would be a good idea to go for the higher dose. Not only did this increase help control my asthma symptoms better, but in combination with the Cellcept, I was doing quite well.
My doctor and I have made a lot of progress up to this point. While most of my symptoms were well controlled, I was still struggling with some other problems that still needed to be addressed. Come back for part 3 to see what else I have tried and where my doctor and I are on my journey to treat chronic hives.
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