Question 1: My doctor responded to my questions about topical steroid side effects with an answer that I, “suffer from topical steroid phobia,” is that possible?

Answer 1: We hope that gathering more comprehensive information to make an informed decision does not constitute ‘phobia.’ Our goal is to fill in the blanks of where the medical industry has not done due diligence in informing their patients properly. Until recently, many doctors minimized the potential risks and failed to communicate them to patients. This book intends to open the discussion wider to include more resources for further research for both patients and medical practitioners.

The worst possible scenario is to have an extreme pendulum effect. The pendulum swings from one extreme to another and they are on opposite spectrums. We humans have a tendency to run the other way if we sense danger as part of our flight or fight instinct. But we don’t have to run in the opposite direction. Corticosteroids can be effective when used carefully and with knowledge of side effects and a well-thought out plan with your medical practitioner(s).

Question 2: How can I balance my fear of side effects with the necessity of taking them carefully?

Answer 2: You’ve made it through this book this far, you are already well-informed and cautious. We are so proud of you. Now this is where good reasoning skills kicks in. You are aware of the side effects. You know what to look for and most importantly, you know that you can out-smart steroids by keeping your adrenals in check. It’s all about timing and quantity of application and potency. The general consensus is that 2 weeks is the demarcation point of giving your skin/adrenals a break. This allows you to keep trying to track and test where the original problem comes from and eliminate the cause – whether it be an allergic reaction from a skin irritant or an auto-immune response stemming from your gut or other systemic reaction.

You also have resources to check like PatientsLikeMe.com and ITSAN.org and online facebook chat groups that have veteran warriors that have been through the trenches of it all.

You also are now aware that alternatives to steroids like emollients can actually help bridge over the difficult flareup stages. The website www.ELAJnaturally.com offers variations of emollients and bath soak alternatives to bleach.

Question 3: There are other new drugs that I’ve been offered to participate in clinical trials and free medications. How do I decide to take them?

Answer 3: The same resources in Question 2 would apply here. Do your research. Some of them are identified as non-steroidal, yet have immune-suppression similarities. Again, those Facebook groups have folks that have already been down that road and can offer some help and more resources.

Question 4: This paranoia of topical steroids is all over the internet. How can I get through the noise?

Answer 4: Be your own patient advocate by keeping your health journal to document your journey. Everyone reacts differently. Everyone has a different health journey. So keep track of each medication, each reaction, each flareup with pictures that will help you document a better case to evaluate what is working for you. The overload on your memory is too much to rely upon when trying to decide if the next course of action is good or not. Once you arm yourself with a well-documented picture diary, you will be a better patient and your doctor will respect you more and consider your wishes more carefully.

By doing this, you prove you are a force to be reckoned with and any doctor will be more inclined to strategize better with you. Furthermore, a full team of doctors, nutritionists and alternative doctors will help bring more discussion and a cross-section of options. It may get overwhelming but remember, you are documenting everything carefully and that will carry you forward through the decisions that need to be made. You’ve got a phone to take pictures and keep a chronological history that matches your medications. That’s gold!