How do you treat porphyria?

Porphyria, the rare genetic disorder that causes issues in heme production, can be really frustrating. It’s not easy being purple! Have you ever looked like Barney while feeling beyond exhausted? If so, it could be time for some serious treatment action. Here are our pro tips on how to deal with porphyria and live your best life.

What is Porphyria?

If you’re reading this article because you or someone you know has been diagnosed with porphyria, then we feel your pain – literally! In short, it’s a medical condition where your body produces excess amounts of something called “porphyrins.” These molecules usually help make hemoglobin which carries oxygen in red blood cells around the body but when they get too much and accumulate in different organs such as the liver or bone marrow; problems arise.

How Do You Treat It?

You may have heard that there isn’t a cure for porphyria yet. But don’t worry my friend; many treatments will help control symptoms and improve their ability to function!

Avoiding Triggers

Certain things trigger bouts of porphyria attacks more than others. Most common triggers include alcohol consumption (sorry party animals), stress and fasting (so no intermittent fasting for us peeps). Now would definitely not be an ideal moment to start looking at extreme marathon running too 😉

Blood Transfusion

One way doctors treat acute cases of porphryin-induced anemia is by giving patients blood transfusions. This type of procedure helps replenish red cell count rapidly allowing them recooperate from exhaustion quickly.

A patient requiring blood transfusion should plan about 4 hours at each visit as there are pre-transfusion tests that need to be done first. Patients may receive up-to six units depending on severity levels.


Firstly, Hydroxychloroquine can alter the immune system response of the patient helping reverse severe symptoms caused by porphyria. From diagnostic imaging to skin problems, Hydroxychloroquine is becoming more widely used in treating autoimmune diseases.

Pain Relief Medications

Let’s talk pain medication! Yes it can hurt like a ditch witch but over-the-counter (OTC) medications such as nonsteroidal anti-inflammatory drugs and acetaminophen are recommended for controling mild pain instead - think Advil or Tylenol. But since you’re reading this article its probably safe to assume that your pain isn’t “mild” if so prescription narcotics may be necessary._

Carbohydrate Loading

If fasting could potentially cause issues then eating should undoubtedly promote health right? Well researchers believe that those with Acute Porphyrias heal faster from any liver damage when on a carbohydrate-rich diet. It helps slow down the production of heme.

Can You Prevent It?

While there is no outright cure yet, proactivity is key!


When we say keep moving we mean do some light exercises; walking would suffice without burning out yourself causing unnecessary triggers. Exercise has been known to help with relaxation which reduces stress levels and find calm during seemingly tenses times_

Sun protection

Protecting oneself from too much sun exposure lessens the chance of developing cutaneous porphyria attacks due to sunlight sensitivity. Sunburnt areas swell up increasing body temperature and instability.

Wear protective clothing including hats or sunglasses while staying in shade avoiding solarium beds whenever possible.

Vitamin D Supplementation

You might wonder how best to still get your daily dose vitamin D once you have started limiting your sunlight exposure. Doctors recommend taking supplements either orally or through injection depending on individual needs_ avoiding all other avenues that could lead towards complications.

Avoid Smoking & Drinking

We return back again toward obvious remedies; limit alcohol consumption and quit smoking altogether. Both hinder positive natural body responses causing reactions that may not favourably serve an individual in any way.

To Sum It Up

When it comes to porphyria, proactive measures are the key investments to a healthy quality of life!

From Hydroxychloroquine to Carbohydrate loading, some treatments work better than others for different individuals. But with time you will discover what techniques are beneficial.

It’s important to practice stress-relieving activities such as exercises which relax tension levels cutting back on triggers like cigarettes or drinking too much at one sitting._ And don’t forget sun protection! Setting tangible goals regarding your porphyria prevention plan can jumpstart your recovery journey today.

So let us raise up our chalices filled with blood instead — cheers & here’s hoping we remain symptom-free for days!