Treatment Journey: Part 3

Welcome back to my series on my treatment journey. If you haven’t already, go back and read Part 1 and Part 2. I’ve had success with a few different medications, but others haven’t helped at all.

I’ve been in this cycle of feeling better with a medication change, and then a few months later, my symptoms recur, sometimes worse than they were before. While the Dupixent and Cellcept were doing a great job together, there was still a little room to increase my dose of Cellcept. This increase made the most significant difference in my symptoms.

One of my most frustrating symptoms was these hives that would appear on my arms and face. They were incredibly itchy and would increase in size over the course of a few days. When they did eventually go away, they would leave marks for weeks. When my dose of Cellcept was increased, these hives went away completely and I haven’t had any since.

Ketotifen

But, as usual, some of my symptoms became unmanageable again, particularly pressure hives and dermatographism. I can’t win. I just can’t. But thankfully I have an allergist who is willing to help me continue to search for answers and treatments to help control my symptoms. Because mast cells are primarily responsible for hives and swelling, it made sense to add a mast cell stabilizer to the mix. So, at the beginning of June 2022, I started a medication called Ketotifen.

Ketotifen started to work almost immediately. My itching was gone, my face wasn’t swelling at all, and I felt like I could finally breathe in my skin. But, this came with a price and a pretty significant one at that.

Just as soon as my symptoms went away, my brain started to get foggy, my body was achy. Over the course of two weeks of being on Ketotifen, my body took a serious hit. It was hard to get out of bed, I couldn’t think clearly, and every bone and muscle in my body ached.

I decided to look up the side effects of Ketotifen since my new pain and fatigue started at the same time as the new medicine. Sure enough, fatigue, lethargy, muscle pain, and joint pain are all side effects. So even though this new medication was helping with my symptoms, I was forced to stop taking it because of the toll it was quickly taking on my body.

It’s been just over two weeks since I stopped taking it and I’m slowly starting to feel more like myself. It’s unfortunate that a medicine that was so helpful was causing more problems than it was solving, but that’s the way it goes sometimes.

Strangely enough, the Ketotifen seems to have reset my symptoms in some ways. Even though I’m not taking the medications, many of the problems it solved are still gone. I’m not itching and my skin is still not getting inflamed like it was before.

While my hives are mostly controlled at the moment, there is always room for improvement. I’ve been messaging my doctor about what my next steps are. Yesterday he sent me another list of things we could try, none of which are particularly appealing to me. I have a visit with him next month, and we will talk about my options then.

Recap

The two most helpful medications I take are Dupixent, which is a biologic medication, and Cellcept, which suppresses my immune system. These two medications, in combination with Zyrtec, Pepcid, and Doxepin, which are all different kinds of antihistamines, are pretty good at controlling my worst symptoms. Xolair on the other hand did not do anything for me, so after a few months of being on it, I decided to stop getting the injections. I also tried a drug called Ketotifen, which absolutely wreaked havoc on my body in many different ways. A friend asked me if I would ever try it again and I said “absolutely not ever!”

Chronic hives are so difficult to manage, and everyone reacts so differently to each medication. I wish there was a one-size-fits-all solution, but there isn’t. My journey to manage my hives is still ongoing. It’s a process that I’m sure will continue to unfold in the coming weeks, months, and years. I am optimistic that my doctor and I can find a solution that works well for me.

These are the treatments and medications that have worked for me, and a few that have not. Always talk to your doctor before trying something new, or adjusting over-the-counter medications.

What are some of the things that have worked for you? Have you tried a treatment that didn’t go so well? Let us know in the comments, or share your story.