A Treatment Update
Last updated: September 2022
As I mentioned in my previous posts about my treatment journey, it’s never as easy or straightforward as you hope it will be. It seems inevitable that once things are ironed out, something else will come up and negate all the hard work that has been done up to that point. And, unfortunately, that just happened to me.
Too high to be safe
When I ended my last posts about my treatment, I happily noted that with the addition of an immunosuppressant, my hives finally seemed to be under control. Well, things have taken a turn. A few weeks ago, my doctor ran some bloodwork. He was checking for a few things, but one of the tests he ran was to check the level of the immunosuppressant in my system. When the labs came back a few days later the level of the immunosuppressant was high. And I don’t mean a little high, I mean high, high.
My doctor recommended decreasing the dose of the medication and rechecking the levels a few weeks later. So I decreased the doses and went back to the lab to see if the decrease in dose was enough to lower the levels in my body. It took a few days for the test to come back, but when it did, it wasn’t the good news I was hoping for. My levels were still elevated, and although they weren’t quite as high as they had been the weeks prior, it was still too high to be safe. My doctor sent me a message almost as soon as possible. The lab results came back. He said that he didn’t think we would be able to lower the dose enough for me to obtain a safe level, while still being therapeutically effective. He told me that I needed to go ahead and stop the medication that day.
Considering my options
I’m not sure disappointment is the word to describe how I felt. Defeated might be a more appropriate term. After months of searching for a way to control my hives, the only medication that was providing adequate relief was quickly taken away.
So now the question is, where to next? Fortunately, there are still a lot of options available for me to try. My doctor and I have discussed many alternatives in the past, so he asked me to consider my options and let him know what I decide.
I poured over these alternatives for hours, looking up how the different options would work (from a pharmacological standpoint), how they would interact with the medications I’m already taking, and which medications have the best evidence of being effective for chronic hives. To be honest, I was pretty overwhelmed. Not just from considering my options, but the impact of losing the thing that was keeping my hives under control.
I sent a message back to my doctor with a list of options I would like to try, and the order I would prefer to consider them. There are lots of factors to take into consideration, so each option has a list of pros and cons. It’s been a few days since I sent him my lists, and I’m still waiting to hear back from him.
Aside from some intense itching, my symptoms haven’t been too unmanageable since stopping the immunosuppressant, but I’m still holding my breath, hoping my hives will not return with a vengeance. Hopefully, by the time you are reading this, there will be a sequel with some exciting news to share about successful treatments in my future. I look forward to writing that article. But right now, I’m in a holding pattern, waiting to see what’s next.
What kind of disappointments have you faced on your journey to treat your hives? Let us know in the comments.
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