Doctor insights on:
Which Vaccines Are Safe With Porphyria
Porphyria results…: From lack of an enzyme in the path for making heme, the oxygen-carrying part of blood. There are many triggers for attacks:alcohol; smoking; drugs (barbiturates, sulfa antibiotics) phenytoin; progesterone; sun exposure; increased iron intake; chronic viral illness (hcv, hiv); stress (illness, emotional/ psycho-logical, physical); dieting/fasting. http://www.porphyriafoundation.com/ for more info. ...Read more
Metabolic disorders caused by abnormalities in the synthesis of heme, the portion of hemoglobin which carries the iron inside red blood cells. Symptoms can range from light sensitivity to liver failure to nerve damage to bouts of terrible pain.Special testing is required to ...Read more
Porphyrias: Porphyria (poor-FEAR-e-uh) refers to a group of disorders that result from a buildup of natural chemicals that produce porphyrin in your body. Porphyrins are essential for the function of hemoglobin — a protein in your red blood cells that links to porphyrin, binds iron, and carries oxygen to your organs and tissue. High levels of porphyrins can cause significant problems. Porphyria mainly affects your nervous system, skin and other organs. The signs and symptoms of porphyria can vary, depending on the specific type and severity. Porphyria is usually inherited — one or both parents pass along an abnormal gene to their child. But in some types of porphyria, environmental factors may trigger the development of symptoms. ...Read more
Porphyria: The porphyrias are metabolic disorders caused by abnormalities in the synthesis of heme, the portion of hemoglobin which carries the iron inside red blood cells. The manifestations of porphyria vary considerably depending on the mutation involved, ranging from light sensitivity to liver failure to nerve damage to bouts of terrible pain. Special testing is required to make an accurate diagnosis. ...Read more
Very serious: The pain is often agonizing, the mental confusion can land the person in the mental hospital permanently, the hyponatremia can be dangerous, and even the constipation sufficient to wreck the quality of life. Management of the illness is successful only if the patient can become educated and proactive in their own care. ...Read more
See below: The preferred screening test for pct is a measurement of porphyrins in plasma. This can differentiate pct from variegate porphyria. The patterns of porphyrins in urine (predominately uroporphyrin and 7-carboxylate porphyrin) and feces (predominately isocoproporphyrin) help to confirm the diagnosis. The presence of an inherited deficiency of urod can be demonstrated by measuring the enzyme in rbcs. ...Read more
Become pro-active: One of my study cases with the medical students involves an unfortunate woman whose illness was missed and was given Phenobarbital for her "nerves", with lethal results. Learn what medications and stressors to avoid. Stay fit. Good hydration and perhaps a sugary drink may help if you can sense an attack coming up; your physician will know whether to offer hematin. Best wishes. ...Read more
Porphyria: From adam: "porphyrias are a group of rare disorders passed down through families, in which an important part of hemoglobin, called heme, is not made properly. Heme is also found in myoglobin, a protein found in certain muscles... Patients with porphyria have a deficiency of certain enzymes needed for this process. Porphyrias involve 3 major symptoms: abdominal pain, rashes, and neurologic symptom. ...Read more
No, but...: There is often underlying hemochromatosis, alcohol abuse or hepatitis c and these are often deadly if missed. Depending on the gene that gave you the pct, you may have none of these above. It won't kill you, but it can mutilate your skin. Get with someone good at managing this illness. ...Read more
Avoid triggers: Glucose and hematin work so-so for the acute attacks; the key to managing this treacherous illness (after making the diagnosis) is to learn what triggers the attacks and to avoid it. Sometime as simple as an old-fashioned barbiturate "to relax" can be deadly. Truly undestand the process and life can be enjoyed fully. ...Read more
What is “latent” porphyria? if my doctor told me that I have “latent” porphyria, does this mean that I will never have any symptoms?
Porphyria: It depends on what type of porphyria we're talking about. Some porphyrias can be dangerous, and some can be hereditary so you need to be more specific about what type you're worried about so that you can get appropriate advice from your physician. Lots of information can be found on the website for the american porphyria foundation at www.Porphyriafoundation.Com. ...Read moreSee 1 more doctor answer
My doctor diagnosed me with porphyria but the porphyria expert said I did not have it. why would this happen and should I be retested?
Porphyria: Testing for porphyria can be very tricky. General medicine doctors can sometimes have difficulty interpreting the test results correctly. If a porphyria expert says you don't have it, that's most likely true. Another option would be to see a different porphyria expert. ...Read moreSee 1 more doctor answer
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