I figured it is about time for me to give everyone an update on how things have been going since I started the treatment for MCAS. I also just got my second shot this week, so I am a little bit closer to the point where the medication will be fully effective. I also went on a little trip recently that really tested my limits, and I wanted to share a bit about that too.
First Dose
Now that I have had the medication for more than a month, I know a bit more about what they mean when they say it needs to build up to fully work. The first dose made a huge difference in how I was feeling, which was great. The problem was that my issues seemed to be able to push past the medication if my body was triggered too much. Before the first dose, I was just always inflamed, and my body was in a constant state of stress. After the first dose, my body started to calm down as long as I took it easy. What I quickly learned, though, is that if I pushed it at all, a whole new type of flare would be kicked off.
My normal flare before treatment was an increase in pain, and because I was in so much pain, I don’t think I was noticing all of the inflammation symptoms. Now that my body is getting breaks to where I almost feel normal, the issue is it was pretty easy to accidentally trigger another flare since all I need to do is get stressed a little bit. The new flares don’t cause the same level of nerve pain and instead feel like a minor annoyance. With the lack of pain, however, I am able to notice the other symptoms more. And at the same time, the closer I got to the end of the month, the worse the symptoms got.
This time around, my symptoms are a rash with hives over about 50% of my body, digestive issues, and a truckload of fatigue. For now, I have been mainly just taking 1-2 Benadryl as soon as I notice any of the hives starting to appear. It seems to keep it at bay for the most part, but I have to really pay attention to it so I can catch it right when it starts.
Hair Loss
One of the known side effects of the medication that I am taking for MCAS is that it can cause hair loss. At first, I wasn’t too worried about it because my MCAS is already causing a lot of hair loss. My legs have lost more than 75% of the hair, and I am getting a lot of patches missing on my back. My theory is that now I am losing hair from both the condition and the treatment, but I won’t know for sure until I start losing circular patches of hair (a side effect of the treatment). Lately, the hives have also spread to my scalp, so I am expecting to see that hair fall out soon too.
This is one of those side effects that is more annoying than a real problem, but I expect that others would feel differently. My backup plan is simple because I can just shave my head if I suddenly start getting circular hair loss. From the pictures I have seen, it looks like there wouldn’t be a good way to hide them since they are usually an inch or more in size. It almost makes me feel a bit relieved because at least now I know why I was losing hair. It’s just too bad that the treatment can also cause something similar to happen.
I will have to update this blog if I end up losing a bunch more hair or if it starts making the distinct circular spots. I think I am just lucky that I am not very attached to my hair.
Second Dose
Due to some scheduling conflicts, I wasn’t able to take my second dose right at 30 days as is recommended. I ended up going more like 35 days, and now I know that I will do anything possible to get my shots on time from now on. I felt like on day 31 that I could already tell something was going on. The hard part is that I was also very active and probably pushing myself too hard at the same time, so it is a bit hard to pinpoint the exact cause. Right away, my hands started to swell if I walked for a few minutes, and I was getting a lot of hives in random spots all over my body.
Over the next few days, it kept getting worse. Finally, I got the second dose, but then I found out that it does take a few days to build back up. That meant that for about four more days, I was still dealing with a few of the symptoms. The doctor said that eventually the treatment will build up in my system, and I won’t have these dips in effectiveness. She also said that the treatment should help calm my body’s response to whatever is upsetting it. In theory, it should break the cycle of inflammation, and then my body can start to really heal.
Random Thoughts
I need to write another post about our big trip, so check back for that soon. It was our first vacation in a long time, and we had a blast. It was the boost we needed because it has been a really rough two years, and we really needed that glimmer of hope to see that we are getting all of our health issues under control.