What do I need to know about Isotretinoin?

Why is isotretinoin prescribed?

Isotretinoin is used to treat severe recalcitrant nodular acne (a certain type of severe acne) that has not been helped by other treatments, such as antibiotics. Isotretinoin is in a class of medications called retinoids. It works by slowing the production of certain natural substances that can cause acne. Brand names include: Absorica®, Amnesteem®, Claravis®, Myorisan® and Sotret®. According to MedlinePlus the branded product Accutane® is no longer on the market. Generic alternatives may be available.

Click HERE to learn more about isotretinoin at MedlinePlus (U.S. Library of Medicine)

Editor’s Note
What works for one doesn’t work for all.  What has been your experience with isotretinoin? Please use Leave a Reply below to share your insights.

SG Isotretinoin

What do I need to know about acitretin?

Why is acitretin prescribed?

Acitretin is used to treat severe psoriasis (abnormal growth of skin cells that causes red, thickened, or scaly skin). Acitretin is in a class of medications called retinoids. The way acitretin works is not known. Brand names: Soriatane®

Click HERE to learn more about acitretin at MedlinePlus (U.S. Library of Medicine) and see “PRP Feedback” below.

Editor’s Note
What works for one doesn’t work for all.  What has been your experience with acitretin? Please use Leave a Reply below to share your insights and learn about the PRP Worldwide Census or complete your PRP Census Form.

SG Acitretin / Soriatane 

How do I find a PRP-savvy dermatologist?

It has been estimated that only one in 20 dermatologists will diagnose or treat pityriasis rubra pilaris during their professional careers. While that estimate may be totally bogus, we can say without fear of contradiction that very few dermatologists remember what little they learned about PRP as a resident in a teaching hospital.

There are at least four reasons to seek out a PRP-savvy dermatologist:

✽  To obtain a second opinion and ask the question: “Do I really have PRP?”
✽  To find a local dermatologist who has prior experience treating PRP
✽  To find a more inquisitive dermatologist who wants to become PRP-savvy
✽  To find a dermatologist more supportive of your needs as a patient with PRP

While the best case scenario is a referral from a fellow PRP patient or caregiver to their PRP-savvy dermatologist. the next best step in the U.S. is Find-A-Derm.

The American Academy of Dermatology (AAD) has a great feature on their website. “Find-a-Derm” can help PRP patients and caregivers identify dermatologists who have the potential for PRP savviness.

✽  Enter your ZIP Code
✽  Select “psoriasis” in the SPECIALTY pull-down menu. Dermatologists who self-identity themselves as specializing in psoriasis keeps you prospect list more manageable.
✽  Click SEARCH

The resulting list provides basic information:

✽  Distance from your ZIP Code.
✽  Name of the dermatologist with a link to more information, e.g., clinic name, full address, office hours, medical training of the dermatologist.
✽  City/State
✽  Telephone number

MAKING THE CALL

When you call the dermatology clinic’s telephone number, it is unlikely that you will speak to the dermatologist. You will be routed to a person responsible for signing up new patients. That person may or may not be a healthcare professional.

Remember, you have an über rare skin disorder. When it comes to PRP, the person at the other end of the phone is clueless. They are, however, the gatekeeper to the dermatologists that treat patients with skin disorders.

Here is one version of a PRP inquiry with one statement and four questions..

STATEMENT
“I have a very rare skin disorder and want to find a dermatologist who feels capable of treating pityriasis rubra pilaris.

QUESTIONS
#1 — “Has Dr. NAME ever treated a patient with pityriasis rubra pilaris?”
#2 — “Has anyone at your clinic ever treated a patient with pityriasis rubra pilaris?
#3 — Are there any other dermatologists at your clinic who might be familiar with pityriasis rubra pilaris?
#4 — Will you call me or should I call you back? My phone number is 555-555-1212?

Unless you are calling Thomas Jefferson University, the staff person will NOT know the answers to any of your questions and will be FORCED to check with the dermatologist(s). In all likelihood the new patient person will be instructed to call you.

IMHO — A failure to respond to your questions is both unprofessional and rude.

Food for thought — A lack of experience treating PRP does not automatically disqualify a dermatologist. Ginny Maxwell, a PRP patient with Juvenile Onset PRP and mother of three PRP children, believes that the best dermatologist is one who wants to learn. “A dermatologist who thinks they know it all is not as effective as a dermatologist who wants to know it all.”

Would you consider your dermatologist to be PRP savvy?

SG 03.00.04

What are the treatment options for PRP?


There is no cure for PRP. Therefore, the goal of treatment is to relieve the symptoms.

According to the National Organization of Rare Diseases: “PRP tends to follow a natural waxing and waning course, with episodes in which there is periodic worsening (exacerbation) or cessation (remission) of symptoms.”  Source: https://rarediseases.org/rare-diseases/pityriasis-rubra-pilaris/

From the PRP perspective, there are two major objectives in the treatment of pityriasis rubra pilaris:

✽  relieving symptoms as they present
✽  achieving long-term remission, if possible

The mantra heard within the PRP community is simple but deafening: “What works for one doesn’t work for all.”

TREATMENT OPTIONS

Oral retinoids are derivatives of vitamin A that slow the growth and shedding of skin cells.

 acitretin/Soriatane®
✽  isotretinoin/Accutane®

Immunosuppressants to slow down the body’s immune system. Often used when oral retinoids are ineffective.

✽  methotrexate (oral and injection)
 cyclosporine (oral and injection)

Biologicals with generally fewer side effects, targeted to reduce inflammation. These are injectable or intravenous (IV) medications that affect the immune system.

✽  adalimumab/Humira®
✽  etanercept/Enbrel®
 infliximab/Remicade®
✽  ustekinumab/Stelara®
✽  secukinumab/Cosentyx®
✽  apremilast/Otezla®

Ultraviolet light therapy — especially for Juvenile Onset PRP

Additional therapies

✽  topical creams and ointments
✽  Traditional Chinese Medicine

No meds at all is an option taken by PRP patients concerned with the negative impact of side effects.

OTHER CONSIDERATIONS

✽  Lab tests to monitor the effects of medications on the body and efficient management of drug side effects are important follow-up issues that will concern PRP patients and caregiver  who is under a doctor’s care.
✽  Access to treatment options varies based on age, geography and cost

See Chapter 3 — Treating PRP

SG 03.00.02

How bad is my version of PRP going to get?


Editor’s Note:  While all patients with PRP share a common core of symptoms, the specific symptoms that patients experience may vary dramatically.

PRP causes pink, red, or orange-red scaly patches on the skin — usually everywhere, but not always. But that is just the beginning.

Each PRP patient diagnosed with PRP — and their caregiver — must deal with a unique version of PRP. The intensity of each symptom can range from bothersome to beyond agonizing. How do we cope?

My father was a self-proclaimed optimistic fatalist. He would say, “Whatever is going to happen is going to happen — but it will turn out good in the end.” It worked in Vietnam, with two failed marriages and during my 20-month journey with PRP.

Members of the PRP Facebook and RareConnect communities have shared their stories. We gain strength from the courage of others. We take comfort in knowing that we are not alone on this journey.

There are two facts that seem irrefutable when one looks at the journey ahead with its challenges to body, mind and spirit.

First — no matter how bad you are feeling, someone else feels worse.

Second — there are countless stories of healing and hope. The light at the end of the proverbial tunnel are candles being held by hundreds of PRP patients and caregivers who have traveled the road you travel now.

As an online community we join hands — as best we can — and rejoice in whatever good news there is to share.

Whether a PRP patient or a caregiver, what has been the greatest challenge you have faced? What has helped you most on your PRP journey?

SG 03.00.01