My Advice to Fellow Scarring Alopecia Patients
by Chandra Kasakevich, Patient and SAF Board Member
October 12, 2022
After years of reading social media posts, and my own journey since my official diagnosis in 2015, I wanted to share some advice in terms of advocacy that I have learned over the years:
- Do not assume that your regular dermatologist has in-depth expertise in your particular type of scarring alopecia. Wouldn’t it be great if this were something common with a well-known treatment protocol? Unfortunately, that is not the case. Remember, any type of scarring alopecia is a relatively rare dermatologic condition. There are few clinical trials or large studies to guide evidence-based treatment options.
- Do your own baseline research. Review and read the SAF website, take notes, and do it all over again. SAF and SAF-approved articles are reviewed by dermatologists who are specializing in hair disorders. Join the Facebook groups and the SAF support groups. Use the Search feature in Facebook for various treatments like hydroxychloroquine (brand name Plaquenil). Many doctors, including Dr. Jeff Donovan and Dr. Jerry Shapiro publicly share balanced and up-to-date information about hair loss for patients.
- Sometimes it takes a long time to get an appointment; and sometimes you do not have time for research. Regardless, my advice is to get a basic understanding of the treatment protocol for your disease so that you are prepared to ask intelligent questions. For example, my first and second doctors were not fans of steroid injections, which is considered standard first line therapy. Well, I wish I had asked more questions, like “Why do you advise against this?” particularly since it was a period of massive, painful inflammation and extensive hair loss.
- Make sure that you have an informed decision after discussing various treatment options available. In some cases, simple treatment with topical agents may be most beneficial, in some other cases, deploying multiple modalities of oral, topical, and injectional treatment may be needed to reverse the disease activity. Many people in our community seem to start on mono therapies, such as doxycycline or long-term prednisone. These decisions are fine; after all, it is your body and your health! However, it is a doctor’s job to make sure a patient is aware of the treatment options. I recently read a post on Facebook in which a patient watched a doctor get out a medical textbook to look up Lichen Planopilaris – right in front of the young woman. Sadly, she is already on her third dermatologist. Therefore, it is a good idea to be familiar with (and perhaps have a copy on hand) of standard treatment protocols published by Dr. Donovan and Dr. Shapiro.
- If your doctor is not taking pictures, or some sort of measurement of your disease state and hair loss, how can they adequately monitor your progress? Creating an objective record such as photo documentation or other measurement periodically is an effective way to track progress. If a doctor is seeing on average 20 patients a day, and your follow-up is in six months, that is a whopping 2,604 patients later. Ask your physician to take baseline and follow-up photos. Some doctors use measurement tools to monitor hair loss.
- Do not let your doctor’s concerns about insurance coverage impact your evaluation of options. Since there are no pharmacological treatments that are indicated for scarring alopecia, everything we use is considered off-label. Therefore, the NHS, Canadian Medicare and most American insurance companies deny coverage for expensive medications. You may be able to appeal successfully though, or gain access to a coverage program, or buy through another country, or use programs like CostPlus or GoodRX. Find out the real cost to you before making a decision.
- Finally, this is your journey and your life. Like many other things in life, you are your best advocate!