TOP 10 THINGS TO KNOW ABOUT PEMPHIGUS VULGARIS

TOP 10 THINGS TO KNOW ABOUT PEMPHIGUS VULGARIS 

"ATTITUDE TOWARDS THE DISORDER MATTERS!"

It is hard, frustrating, and overwhelming to come across this term. People who are reading this might be among the warriors who got diagnosed recently, or the caregivers who are supporting their loved ones in suffering.

Let this page make it easier for your initial research and understanding of terminologies. Keep in mind that every day is a learning experience!

As days pass by, you will develop a tolerance to identify the triggers and symptoms. Treatment, flare-ups, and the duration of medication all differ from person to person. This page is for knowledge purposes only.

World Rare Disease Day - February 28

Definition: A rare autoimmune skin condition that cause blisters and sores on the skin or mucous membranes.


top 10 questions to know about pemphigus vulgaris


1.What foods should you avoid ?

  • Spicy foods 
  • hard foods 
  • alcohol 
  • processed sugar. food high in sodium 
  • citric fruits (oranges, grapefruit, lemons, limes, mandarins, tangerines, pomelos and yuzu, tomatoes, kiwi and acidic foods, raw mango, tamarind)

2. What vitamins are important?

  • Vitamin D, calcium (to prevent steroid side effects.)
  • iron (fatigued) 
  • zinc, selenium and cobalt

3. Is sun bad for PV?

Yes, sun exposure is considered bad for people with pemphigus. Significantly worsen the symptoms and causes flares of the disease . Stay away from heat.

4. What diet need to be followed?

  • HIGH PROTEIN  
  • FIBER  
  • PROBIOTIC
  • HYDRATION

5. Is pemphigus vulgaris permanent?

Yes, no cure, but proper treatment and symptoms can be managed and controlled which falls under remission.

"REMISSION: A remission occurs when a patient is completely free of lesions of pemphigus and is not receiving a systemic therapy"

6. Can you live a normal life ?

Yes, majority of the people have a normal life. But the initial stage of the disease is crucial, it requires extensive care and support. Identifying the trigger; stress has been considered as the trigger. Managing mental health is the first and foremost step into healing.

7. Does the eye gets affected?

Blisters can form on the tissue lining an eyelid. Some people get pink eye with lots of mucus or crusts along their eyes. For a while, eyes may become very sensitive to light.

In regard to PV patients BLISTERS: body fluid (serum, blood) within the upper layers of the skin.

8. What is the first line of treatment?

  • Steroids (dosage gets tapered slowly). (DO NOT! tamper the dosage without physicians advice.) 
  • Immunosuppressant 
  • Immunotherapy (Rituximab, IVIG)
Immunotherapy: treatment that stimulates or suppresses your immune system to help your body fight disease or infection.

9. Small steps to begin a new normal.

  • protect the skin from friction
  • regular follow up with the doctor
  • small note on affirmation

10. What can happen if flare ups are ignored?

  • Infection 
  • Chronic pain
  • Wide spread [CAN AFFECT: scalp, nails, genital, ears (inner), nose (inner), sole (foot) (from head to toe)]
  • Dehydration


 

 

 

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