marijuana for porphyria
Whether you just received a new porphyria diagnosis or you’ve been struggling with the condition for years, it can be hard to deal with. No matter how severe your case, the symptoms of porphyria can make simple activities feel like unconquerable tasks. Fortunately, medical marijuana for porphyria can help.

What Is Porphyria?

Porphyria is a rare disorder that primarily affects the nervous system or skin and can also cause abdominal pain. Patients usually inherit the disorder because parents pass the gene abnormalities to their children. When an individual has the condition, their cells fail to change the chemicals porphyrin and porphyrins precursors in their body into heme — a substance that makes blood red.

The body creates heme mostly in the liver and bone marrow. Bone marrow is the sponge-like, soft tissue inside your bones which makes stem cells that turn into one of the three forms of blood cells: white blood cells, red blood cells and platelets.

The heme biosynthetic pathway is the process of making heme. Eight enzymes control each step in the process. If any of the enzymes are at a low level, the body will have issues making heme. This is known as a deficiency. Porphyrin and porphyrins heme precursors start building up in the body, causing illness.

Symptoms of Porphyria

Porphyria symptoms may vary in how severe they are, as well as by type and among people. Some individuals who have gene mutations causing porphyria don’t ever have any symptoms.

Acute Porphyrias

Acute porphyrias include types of the disorder that can cause nervous system symptoms that come on suddenly and can be severe. Symptoms can last a few days to several weeks and generally improve gradually after an attack. The common type of acute porphyria is intermittent porphyria.

acute porhyria

Symptoms and signs of acute porphyria might include:

  • Pain in your legs, chest or back
  • Severe abdominal pain
  • Nausea and vomiting
  • Diarrhea or constipation
  • Urination problems
  • Breathing problems
  • Muscle pain, numbness, tingling, weakness or paralysis
  • High blood pressure
  • Irregular or rapid heartbeats (palpitations)
  • Brown or red urine
  • Mental changes like confusion, anxiety, paranoia, disorientation or hallucinations
  • Seizures

Cutaneous Porphyrias

Cutaneous porphyrias include types of the condition that cause symptoms of the skin due to sunlight sensitivity, but they don’t typically affect your nervous system. The most common form of all porphyrias is porphyria cutanea tarda (PCT).

Because of being exposed to the sun, you could experience:

  • Itching
  • Blisters on exposed skin, typically the face, hands and arms
  • Brown or red urine
  • Thin, fragile skin with skin color changes (pigment)
  • Sudden erythema (painful skin redness) and edema (swelling)
  • Excessive growth of hair in affected areas

Many symptoms and signs of porphyria mimic those of other common conditions, making it hard to know if you’re experiencing a porphyria attack. Seek medical help if you experience any of these symptoms above.

Causes of Porphyria

Each form of porphyria comes with the same cause — a heme production problem. Heme is a hemoglobin component, a protein in the red blood cells that transfer oxygen to the entire body from the lungs.

Heme provides blood with its red color, and it contains iron. Heme production occurs in the bone marrow and liver and involves various distinct enzymes. When there’s a shortage of any of these enzymes, it creates an excess buildup of specific chemical compounds associated with the production of heme. The lack of enzyme will determine the specific type of porphyria.

You inherit most forms of porphyria. Most porphyrias occur when just one parent passes along an altered gene. The specific type will determine the risk of porphyria development or if you pass it to your children.

PCT, on the other hand, is typically an acquired condition. While you can inherit the enzyme deficiency that leads to PCT, most individuals that do inherit it don’t experience symptoms. Instead, the disorder becomes active when a certain lifestyle choice or condition triggers the deficiency.

These include:

  • Hepatitis C
  • HIV
  • Estrogen use in women
  • Drinking alcohol
  • Smoking

Acute porphyria episodes, which hardly ever occur before puberty, could become triggered by certain drugs, including:

  • Seizure medications
  • Barbiturates
  • Birth control pills
  • Sulfa antibiotics

Other possible triggers are:

  • Drinking alcohol
  • Smoking
  • Fasting
  • Sun exposure
  • Menstrual hormones
  • Stress
  • Infections

Types of Porphyria

There are various types of porphyria, but you can classify them into two categories:

  1. Hepatic: Liver problems can cause the hepatic forms of the disease. Symptoms of the hepatic forms involve central nervous system problems and abdominal pain.
  2. Erythropoietic: Problems with red blood cells cause erythropoietic forms.

kidney pain

Hepatic porphyria has five types:

  1. Acute intermittent (AIP)
  2. Variegate porphyria
  3. Hereditary coproporphyria (HCP)
  4. Porphyria cutanea tarda (PCT)
  5. Aminolevulinic acid dehydratase deficiency (AVADDP)

The most common type is PCT.

Physical Effects of Porphyria

The form of porphyria you have determines the potential complications you could experience. If not treated promptly, acute porphyrias can threaten your life. While you’re having an attack, you could experience:

  • Breathing problems
  • Dehydration
  • High blood pressure
  • Seizures

Episodes of acute porphyrias often require treatment at a hospital. There could be long-term physical effects, as well, with recurrent acute attacks that include chronic kidney failure, chronic pain and chronic liver damage.

Cutaneous porphyrias can cause permanent skin damage. Additionally, the skin blisters may become infected. After cutaneous porphyria, your skin could have an abnormal coloring and appearance once it heals. You may also have scars and fragile skin.

Mental Effects of Porphyria

One study evaluating self-rated psychosocial components in individuals with acute porphyria found anxiety (mostly) and depression is more common in individuals with porphyria than in the general population. Almost half (46 percent) of the study’s subjects reported some issues with anxiety and/or depression, with 26 percent experiencing anxiety and 13 percent experiencing depression.

Porphyria Statistics

Facts surrounding porphyria from the American Porphyria Foundation include:

  • Taken together, all porphyria types affect fewer than 200,000 individuals in the U.S.
  • The prevalence of porphyria cutanea tarda, the most common type, is around one in 10,000
  • The prevalence of erythropoietic protoporphyria, the most common erythropoietic porphyria, is around one in 50,000 to 75,000
  • The prevalence of congenital erythropoietic porphyria (very rare), is around one in 1,000,000 or more
  • Only six cases of ALAD-deficiency porphyria have been documented

porphyria statistics

Porphyria History

The “porphyrin” term, back in 1841, came from the Greek term “porphyrus,” which meant reddish-purple. Scientists first believed the blood’s reddish color was from iron. One scientist conducted an experiment to show this wasn’t the case. He used concentrated sulfuric acid to wash the dried blood and free the iron. Then, he used alcohol to treat it, and the iron-free residue that resulted appeared with a reddish-purple color even though no iron compound was in it.

Gerardus Johannes Mulder, in 1844, determined the iron-free, purplish substance’s chemical composition and named it “hematin.”

Current Treatments Available for Porphyria and Their Side Effects

The treatment for porphyria depends on what type you have and the severity of your symptoms. Treatment usually involves identifying the signs and avoiding their triggers and if symptoms do occur, relieving them.

Avoiding triggers could include:

  • Not using recreational drugs or alcohol
  • Not using medicines known to trigger an acute attack — your doctor can provide you with a list of unsafe and safe drugs
  • Not smoking
  • Avoiding dieting and fasting involving severe restriction of calories
  • Minimizing sun exposure — wear protective clothing when outdoors, use an opaque blocking sunscreen like a sunscreen with zinc oxide and use window filters when indoors
  • Taking specific hormones to avoid premenstrual attacks
  • Taking steps for reducing emotional stress
  • Treating illnesses and infections promptly

Acute Porphyrias

Acute porphyria treatment focuses on relieving symptoms quickly and preventing complications. Treatments could include:

  • Hemin Injections: A medicine that’s a form of heme will limit the production of porphyrins in the body. You could experience side effects such as tenderness, pain or swelling along your veins or discoloration of your skin.
  • Intravenous Glucose, or Sugar You Take Orally: To maintain a sufficient carbohydrate intake
  • Hospitalization: For treating symptoms such as vomiting, severe pain, problems breathing and dehydration

Cutaneous Porphyrias

Cutaneous Porphyria treatment focuses on minimizing triggers like sunlight exposure and reducing the body’s amount of porphyrins to help relieve your symptoms. This could include:

  1. Taking medication to treat malaria, like Plaquenil (hydroxychloroquine) or, less often, Aralen (chloroquine) to absorb the extra porphyrins will help your body eliminate them faster than usual. Generally, only individuals who can’t tolerate a phlebotomy will use these medications.

Side effects of these medications may include:

  • Dizziness
  • A headache
  • Ringing in your ears
  • Hair loss
  • Loss of appetite
  • Mood changes, irritability, feeling nervous
  • Weight loss
  • Nausea and vomiting
  • Skin itching or rash
  • Stomach pain
  1. Periodic phlebotomy (drawing blood) to decrease the iron in your body, helping to decrease porphyrins.
  2. Replacing vitamin D deficiency with a dietary supplement because of avoidance of sunlight.

Recent Developments in Porphyria

There have been recent advances in understanding the molecular genetic heterogeneity and pathogenesis of “hepatic cutaneous,” “acute hepatic” and “erythropoietic cutaneous” diseases. These advances, including DNA-based diagnoses, have resulted in an improvement in diagnosing and treating the diseases.

More than 40 clinical trials are identified to study porphyria.

How/Why Marijuana Can Be an Effective Treatment for Porphyria

Using medical cannabis for porphyria is the perfect option for individuals struggling with nausea and vomiting associated with the disease.

marijuana relief

While certain medications are used to treat the disorder’s underlying causes, they can cause highly uncomfortable symptoms like nausea and vomiting. Also, opiates are often prescribed for pain but can be addictive and less effective over time. Cannabis can address both of these issues. It’s a natural anti-anxiety treatment that isn’t highly addictive as opiates, is compatible with other drugs that are usually incompatible and only causes a low risk of side effects.

Medications like analgesics, metabolized by cytochrome P450 (CYP), could induce acute attacks in individuals with hepatic porphyrias. Recently, a study suggests cannabinoid pharmaceutical preparations could help with treating pain. The study’s purpose was to evaluate the effects of a cannabinoid CB1 receptor agonist, CP-55,940, on the hepatic heme metabolism of mice.

The study’s results showed CP-55,940 treatment reduced CYP concentrations by 80 percent and resulted in a 158 percent increase in HO activity.

This indicates CP-55,940 as well as its metabolites don’t behave like porphyrinogenic medications and could be a safe alternative pain treatment in individuals with acute porphyrias.

What Side Effects/Symptoms of Porphyria Can Medical Marijuana Treat?

Some symptoms marijuana for porphyria can help treat include:

  • Pain: Opioid narcotics like Percocet and Vicodin are often prescribed to treat chronic severe pain. Doctors may recommend analgesics like acetaminophen and ibuprofen. Narcotics and opiates may be effective in treating severe pain, but they are incredibly addictive and come with substantial harmful side effects. While not addictive, analgesics aren’t as effective at reducing severe pain and can cause serious side effects if used long-term such as stomach ulcers and bleeding, kidney damage and liver damage. Medical weed treats chronic severe pain and is much safer than opioids.
  • Nausea: It’s an ideal treatment for severe nausea, as well as its accompanying vomiting.
  • Seizures: Medical pot is also effective in treating seizures, and many medical professionals and pharmaceutical groups are showing a growing interest, prompting various clinical trials and studies on the herb for seizure treatment. Many individuals struggling with seizures are already finding great relief from medical cannabis, either by combining the herb with other treatments or taking it by itself. Other patients turn to weed when they can’t tolerate anti-seizure medicines and can control their seizures successfully. Cannabis for porphyria, as mentioned, doesn’t produce the harsh side effects as other traditional medications do. Its side effects are mild and may include: hunger, red eyes, dry mouth, fatigue, short-term memory loss and a lack of concentration and focus.
  • Anxiety and Depression: Medical cannabis also helps with depression and anxiety.

Best Strains of Marijuana to Use for Symptoms of Porphyria

Cannabis offers the benefits of being cultivated professionally for a consistent product. You’ll find many different variations in medical marijuana, and porphyria strains available and commercial growers are now able to produce plants and strains more accurately with the right chemical compound balance. Ideal strains based on your symptoms are as follows:

Best Methods of Marijuana Treatment to Use to Treat Side Effects and Symptoms of Porphyria

Here are some methods you can try to receive your cannabis treatment:

  • Edibles: Those worried about the effects of smoking may prefer edibles, which provide you with a milder, more extended effect. The effects may take a little while to come on, but they last longer.
  • Topicals: Many patients use topicals like balms and lotions to deal with their pain. You can also find transdermal patches that release the medication directly into your system through your skin. Many come with a 100 percent CBD blend allowing you to avoid THC’s psychoactive effect.
  • CBD Oil: CBD oil is gaining a lot of popularity these days. You can take it sublingually under your tongue or as a pill. It’s great for those who are looking to be discreet.

While smoking weed historically was the most common way of using cannabis for both medical and recreational users, it, like smoking tobacco, produces toxins and tar you inhale along with the herb. Therefore, it is not the most recommended way to consume your medical cannabis.

Becoming a Medical Marijuana Patient for Porphyria

At MarijuanaDoctors.com, our goal is to provide you with the essential information you need to make an informed decision if medical cannabis is right for you. Your first step is to get familiar with your state’s laws on medical weed.

Then, you can use our directory to find a qualified cannabis doctor and dispensary to begin your medical marijuana for porphyria treatment plan. They can help provide you with the proper knowledge of the different cannabis products you’ll come across and design a treatment plan specific to your symptoms. Book your appointment today so you can finally start experiencing the relief.

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  1. https://www.mayoclinic.org/diseases-conditions/porphyria/symptoms-causes/syc-20356066
  2. https://www.ncbi.nlm.nih.gov/pubmed/16435203
  3. http://www.porphyriafoundation.com/about-porphyria
  4. https://clinicaltrials.gov/ct2/results?cond=Porphyria+&term=&cntry=&state=&city=&dist=