Chapter contents
I. Introduction
When you have a complicated chronic condition like HS, it can be challenging to keep track of your treatment history as well as thoroughly cover all the topics and concerns you hope to discuss with your doctor during your visits. It can also be difficult to accurately communicate what your experience with your HS has been like and how your disease has been trending between doctor visits. Additionally, triggers can be hard to identify as well.
An HS tracker or journal is a tool that can help solve these problems as a simple, organized, and visual way to keep track of your HS journey.
An HS tracker can make it easier for you to track the course of your disease, identify potential triggers, and better evaluate your treatment response.
This chapter covers the benefits of keeping an HS journal as well as recommendations around what to consider including in your journal.
II. HS Tracker Benefits
Starting an HS journal can be a great way to keep track of your HS symptoms and to accurately relay to your healthcare provider what has been going on between visits. Although it would be ideal to see your doctor every week and keep them updated on your symptoms, the reality is that you are going to see them a few times a year, and during those visits you want to have a good way to express how you have been doing since you last saw them.
A journal can help your HS treatment journey in many ways, including:
• Keeping track of symptoms:
It can help you keep track of your HS symptoms like flares, pain, itch, drainage, and how often you are getting new boils.
• Keeping track of progress:
It can help you and your healthcare provider understand how your HS is trending. It can help you identify if your condition is overall worsening, which may indicate a need to re-evaluate your treatment plan. You would also have a record of your positive progress, like if you started a new medication that has been helping decrease flares. It can be easy to forget the progress you have made after time has passed, so a journal can be a helpful reminder of how far you have come.
• Identify potential triggers:
It can help you identify different things that may be triggering your HS symptoms like certain foods, stress, weather, menstrual periods, clothing, etc.
• Agenda for your next doctor’s visit:
It can be hard to remember everything you want to discuss with your doctor during your office visit, but keeping an HS journal can help you to remember the points you want bring up and questions you want to ask your healthcare provider.
A journal can also help your healthcare provider in many ways, including:
• Productive doctor visits:
A journal can be a more time-efficient way for your healthcare provider to understand what has been going on. They will be able to look through your notes and focus on things that they have identified are important and need more attention. This will lead to a more productive visit.
• Shared-decision making:
A tracker can help you and your doctor make thoughtful joint decisions, such as what medications to start or stop and what referrals to make based on how you have been doing.
III. How to Start an HS Tracker
An HS tracker should be a collaborative effort between you and your doctors. The first thing to do is to consult with your healthcare provider to determine what would be helpful to track between visits.
Through a collaborative effort, it will be easy for you to track your progress and for your doctor to go through your notes during the visit.
The best HS journal is going to be one that is easy for you to use and one that you will be consistent with updating. An HS journal can be in a notebook, a printout template, or your electronic device like your phone or laptop.
Some basic information to record in your HS tracker are dates, your HS symptoms (such as flares, pain, and itch), and the intensity of your symptoms (for example, mild, moderate, or severe). It is also important to write down any medications, supplements, and topical products that you start and stop. You can also choose to record other factors that can potentially affect HS, like stress levels, certain foods, and exercise, etc. Table 26.1 lists examples of helpful things to
| HS Tracker Items to Record | ||
|---|---|---|
| Date | • Date, month, and year of each entry | |
| HS Symptoms | • Location of active boils • Pain levels • Itch levels • Drainage levels |
|
| HS Flares | • Location of any new boils or old boils that have reappeared • Number of new boils |
|
| Medications | • Start and stop date of all medications and supplements you are taking • Topical products that you are using and number of times a day they are used |
|
| Food Triggers | • List of foods that you ate that could potentially trigger your HS (which may include dairy, Brewer’s yeast, simple carbohydrates, etc.) • List of foods that you have noticed trigger flares |
|
| Stress Levels | • Rate your stress level on a 1-10 scale | |
| Exercise | • Type of exercise you performed | |
| Other | • Other thoughts of what you feel may have an impact on your HS • Notes on how your HS is impacting your quality of life |
|
include in your journal. You can always modify your journal to include or exclude things based on what is working for you and your doctor.
An example of a basic HS journal template can be found at the end of this chapter. It may give you inspiration for your own HS journal. Keep in mind it is just a sample and you are encouraged to tailor your jouranl based on what you know is important for you to track and also based on a conversation with your healthcare provider.
IV. Questions and Answers
Question 1 How do I track my HS symptoms and flares? Answer
Then decide with your doctor what information would be helpful to record. Sample items to include in an HS journal are listed in Table 26.1. Then you are ready to start recording!
Question 2 How can I tell what factors may trigger my HS? AnswerAn HS journal is a great way to understand what factors may be triggering your HS. Recording potential triggers in your journal – such as stress, mood, food intake, and exercise – can show you patterns of what might be triggering your HS. When reviewing the data in your journal, you may notice certain patterns. For example, you may realize you repeatedly have flares after eating certain foods or after doing certain exercises.
Question 3 How can I track if a medication is working or not? AnswerSometimes it can be hard to tell whether a medication is working, especially if you have been taking it for a long time. An HS tracker can help with this since you can look back at your symptoms before you started taking the medication and look at your more recent symptoms to decide if you are having decreasing flares or pain. Showing your healthcare provider your symptoms before and after starting a medication can help you decide – as a team – if the medication is working or not.
Question 4 How do I communicate how my symptoms have been doing in the time between visits? AnswerAn HS journal is a great way to help communicate how you have been doing between visits. Before your appointment, look over your journal since your last
visit to determine the topics you want to discuss with your doctor. An example scenario would be if you started adalimumab six months ago and notice you have fewer flares every month. That would be a great progress update to call out.
