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Which advice would you give to someone who has just been diagnosed with Pityriasis Rubra Pilaris?

See some advice from people with experience in Pityriasis Rubra Pilaris to people who have just been diagnosed with Pityriasis Rubra Pilaris

Pityriasis Rubra Pilaris advice

Pityriasis Rubra Pilaris (PRP) is a rare and chronic skin disorder characterized by reddish-orange scaly patches, rough bumps, and thickened skin. Being diagnosed with PRP can be overwhelming and may raise many questions and concerns. While I am not a medical professional, I can offer some general advice and suggestions to help you navigate this condition.



1. Educate Yourself


Take the time to learn about PRP and its symptoms, causes, and treatment options. Understanding the condition will empower you to make informed decisions about your health and treatment plan. Consult reputable medical websites, books, or seek guidance from your dermatologist.



2. Find a Knowledgeable Dermatologist


Seek out a dermatologist who specializes in treating PRP or has experience with rare skin disorders. A knowledgeable dermatologist will be better equipped to provide accurate diagnosis, monitor your progress, and suggest appropriate treatment options.



3. Follow Your Treatment Plan


Stick to the treatment plan prescribed by your dermatologist. This may include topical creams, oral medications, phototherapy, or a combination of treatments. Consistency and adherence to the prescribed regimen are crucial for managing PRP effectively.



4. Communicate Openly with Your Dermatologist


Establish open and honest communication with your dermatologist. Share any concerns, changes in symptoms, or side effects you may experience. Regular check-ups will allow your dermatologist to monitor your progress and make adjustments to your treatment plan if necessary.



5. Manage Symptoms and Discomfort


PRP can cause itching, dryness, and discomfort. To alleviate these symptoms, consider:



  • Using gentle, fragrance-free moisturizers to keep your skin hydrated.

  • Avoiding harsh soaps, hot water, and long showers, as they can worsen dryness.

  • Wearing loose-fitting, breathable clothing to minimize irritation.

  • Using over-the-counter hydrocortisone creams or antihistamines under your dermatologist's guidance.



6. Seek Emotional Support


Living with a chronic skin condition like PRP can be emotionally challenging. Reach out to friends, family, or support groups to share your feelings and experiences. Connecting with others who have similar conditions can provide valuable emotional support and coping strategies.



7. Protect Your Skin


Shield your skin from excessive sun exposure by wearing protective clothing, using broad-spectrum sunscreen, and avoiding peak sun hours. Sunburns can exacerbate PRP symptoms and increase skin sensitivity.



8. Maintain a Healthy Lifestyle


Adopting a healthy lifestyle can positively impact your overall well-being and potentially improve PRP symptoms. Consider:



  • Eating a balanced diet rich in fruits, vegetables, and whole grains.

  • Engaging in regular exercise to boost your immune system and reduce stress.

  • Getting sufficient sleep to support your body's healing processes.

  • Reducing stress through relaxation techniques like meditation or yoga.



9. Stay Positive and Patient


Living with PRP can be challenging, but maintaining a positive mindset and being patient with your treatment progress is essential. Remember that everyone's journey with PRP is unique, and it may take time to find the most effective treatment approach for you.



10. Stay Informed about Research and Clinical Trials


Stay updated on the latest research and clinical trials related to PRP. New treatment options and advancements may emerge, offering hope for improved management and potential future therapies.



Disclaimer: The information provided here is for general informational purposes only and should not be considered medical advice. Always consult with a qualified healthcare professional for personalized guidance and treatment options based on your specific condition.


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Stories of Pityriasis Rubra Pilaris

PITYRIASIS RUBRA PILARIS STORIES
Pityriasis Rubra Pilaris stories
  My name is Scott and I’m 42 years old.  I live in SE Michigan and have most of my life.  I have had PRP on my hands and feet for as long as I can remember.  It was not diagnosed until I was 14 and needed stitches on my hand.  The ER doc not...
Pityriasis Rubra Pilaris stories
Affecting elbows, knees and occasionally patches appearing elsewhere.  Haven't found a treatment that works so just take general care of skin.  
Pityriasis Rubra Pilaris stories
MY PRP Story is on my blog at : http://kevsprp.blogspot.co.uk/
Pityriasis Rubra Pilaris stories
first little lesion in early December by late January I was full on "red man".  Now on Enbrel with methotrexate and am visibly better I'm now a lovely shade of rosy pink with some newly appearing white spots. I believe I am getting better and there ...
Pityriasis Rubra Pilaris stories
I got PRP when I was 4-6 months, but first diagnosed when I was 13 years. Now I am old and have never had periods without PRP.

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I would like to connect with others who have had PRP that began when they were baby

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