I had mentioned before that I had a really bad flare-up of my autoimmune disease. I’ve dealt with flare-ups since I was a teenager, but the one that I had recently was the worst it’s ever been. And despite hoping I could be prescribed something over the phone to help it, I also knew that there was almost no chance that would happen and I’d have to go in for an appointment. I was right and I had the appointment this past week.
In the past year, the only times I’ve been to the hospital were for urgent care, getting my flu shot, and picking up prescriptions that couldn’t be mailed. I don’t want to have to be there if I can help it right now. And of course, when I had to go, we were experiencing some of the worst numbers we’ve ever had. Fortunately, where my dermatologist is located is a side building next to the main hospital. So it wasn’t that crowded and I only saw one other person in the waiting room.
Even though my dermatologist has seen me before (he’s the one who did the small surgery on my face) and he technically confirmed I had this condition, he still wanted to make sure that he evaluated me correctly and properly put in a diagnosis from him. The autoimmune disease I have is called Hidradenitis suppurativa (or HS). Basically, it’s an inflammatory condition that causes me to have these bumps under my skin that can be extremely painful. Sometimes, they can come to the surface of my skin and it can look like acne or ingrown hair. So a lot of people are misdiagnosed for a long time. I wasn’t properly diagnosed for about 8 years. For me, it’s always been somewhat minor. I didn’t have severe flare-ups as some people have. And I still don’t have it nearly as bad as most. But it can still be extremely painful and I feel like when I have a bad flare-up I usually have other issues like fatigue.
There’s no real cure for HS, but there are treatment options. And the one I was most familiar with was an injectable medication that can help. But it can also make you immunocompromised, so I knew I didn’t want to try that (at least not now). But my dermatologist is one of the few doctors who is very familiar with HS and how to manage it. So I was ready to hear what he had to say when we discussed this more seriously.
He quickly confirmed my diagnosis (which I knew would happen) and talked to me about a few different treatment options. He knew my issues with the injectable medication for now, so we didn’t really talk about that. But he did discuss some surgical options. I didn’t realize I would be a good candidate for surgery, but it was interesting to hear how it can be a permanent solution for a specific area. I don’t want to do surgery just yet, but I’m glad he brought it up so I could do some research on my own so I can be more familiar with it if it comes up again as a good option for me.
There are a few things I already do, like using specific soaps, but I knew there were other topical options as well as medications I could try. And my dermatologist decided that trying a daily pill would be the best one for me to start with. This isn’t a cure and it won’t make it go away forever, but it has the possibility to make my flare-ups not as frequent or severe. There’s no guarantee it will work, but I’m willing to give it the time to work. So for the next 3 months, I’m testing out this medication and will go back in for another appointment when I’m done. Then we will take it from there.
Maybe this medication will work and maybe it will fail. I will say that it’s almost been a week and my pain isn’t as bad. I still have a lot of flare-ups, but they are getting smaller. But that could just be the regular lifecycle of them. I’m trying to stay optimistic because at least I’m trying something. And if this doesn’t work, I’m just grateful that my doctor is going to keep working with me on this. I’ve had doctors in the past who didn’t understand how HS worked and the treatment options and they were offering solutions that I knew wouldn’t work. Having someone on my team who gets it is a huge victory on its own.
All I can do for now is continue to take the medication and hope for the best. And in 3 months, we’ll see what the next step will be. But it’s still more of a plan than I’ve had in a long time, which is giving me a lot of hope.
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