Medication Dead End: What Do I Do Now?

I’m standing in the checkout and I’m loaded up with the usual: self-adhesive gauze pads, additional gauze pads, foam tape, 3 bottles of peroxide, one bottle of rubbing alcohol. Is there something I’m forgetting? Yes.

I step back out of line to grab a bottle of white vinegar, a bottle of apple cider vinegar, a big bag of cotton balls, and some baking soda. To be safe, I should probably get some anti-fungal cream and some Vick’s vape-o-rub. Oh, and I would definitely be in a lot of trouble if I forgot to grab panty liners to line my clothes to prevent leaks. I hop back in line because that’s really it. This is all the stuff I keep stocked to treat myself and my skin, and do some cleaning after the messes I make.

Having to go shopping more frequently

But when I think about it, that’s not really it at all. The problem here is that I have to go shopping more often than I used to. It isn’t because I’ve skipped doses on a medication I’m on (an injectable); it’s because it has stopped being effective.

In fact, I believe it has accelerated the disease because it’s now showing up in other areas, and the HS lesions are more intense. They are larger, they are higher in number, they are showing up in additional locations, and they are lasting longer. I just get this overwhelming feeling that no matter what I do, nothing is helping. I feel hopeless and burned out.

Raise your hand if you have been in this situation before. What do you do?

Figuring out how I'm going to proceed

What I want to do is eat a nice, big bag of M&M’s, but that would probably make a good baker’s dozen of lesions pop up as well, so that’s out. So I continue to treat my lesions, but I take a mental time out to just kind of regroup and figure out how I’m going to proceed. Sometimes this takes me a week to chill and watch a bajillion episodes of detective shows.

The logical first thing to do is to take stock. Did I change my diet, take on more stress, change the type of clothing I wear? If yes, then eureka! Otherwise, more subtle changes can make a difference, but I have to take my time and make sure I am considering all of the possibilities before I rule anything out. If that’s not it, it’s back to the drawing board.

Staying connected

Personally, I’m really big on research so I feel like I stay connected with my choices in my healthcare. When you are looking for new ideas, where do you look? I do research by using key phrases and look for medical publications that talk about treatments to find out how successful they are. When I refer to treatments, I’m not talking about over-the-counter remedies such as Vick’s or Hibiclens that make us more comfortable; it’s the treatments that require medical supervision.

I also belong to patient support groups. I don’t post much, but I do read what other people write, and then I research what they talk about and weigh the effectiveness. What I’m looking for when I am reading all of this data is how old the regimen is, how many people were helped by it, and how long lasting the good effects were. For example, surgery – both spot and radical – is considered fairly effective, but the blue light and acid treatment for the most part is considered not effective for most people.

Taking the information to my doctor

The next thing I do is gather up my new information and take it to my doctor. I don’t just say, “Hey, what about XYZ?” I bring along a scientific study to back up my request, and it’s usually the most thorough one I can find in case the doctor has doubts. This has become second nature after having to approach doctors with requests often because of having HS and co-morbidities.

Lastly, I really take a good, hard look at my doctor. Is that person open-minded or giving me a lot of options, or are they effectively a one-trick pony? I think it’s a little heart-breaking when I see fellow HS patients in groups tell me that they have tried every treatment, then they list maybe two or three. I really feel the need to stress that there are a number of treatments. Actually, within each category (like antibiotics, or biologics, etc.), there are multiple choices. If one doesn’t make a dent in your lesions, try another version. And hey, try a cocktail.

Talk to your doctor about the pros and cons of utilizing one med from three different categories – like a medication that affects hormone levels, plus a biologic, plus a topical – and see if your doctor is willing to give that the green light. Maybe they have a different but just as effective suggestion that will keep your HS at bay.

We have to stay on top of our care!

However, if your doctor says, “This is what I use to treat all of my HS patients,” maybe it’s time to search for another provider (if insurance and distance allows). Sometimes if we stay with the same provider for too long, we don’t find out that we missed out on more effective care unless or until we are for some reason forced to try another doctor. Hidradenitis suppurativa is a progressive disease, and we must stay on top of the best of care if we have any hope of remaining comfortable for as long as possible.

A medication dead end can happen at any time, and to anyone. If our science could catch up to our bodies, we would have a much clearer picture as to why it is no longer working for us. We don’t have this luxury. So how do you handle a medication dead end when it happens?