First at all, you must always remember that porphyria is not a virus that attacks you from the outside and is not an impairment as missing a leg.
Porphyria is a part of you, not an avatar or a demon shaking your body as his desire: you can prevent, you can avoid.
The first problem – and sometimes the one – for cutaneous carriers is the sun light and not anyone can have a night time or indoor job, as not everyone can migrate in woodlands or big cities.
But for the most part of us – those with acute porphyrias – the factors of triggering are a lot and ugly variable.
If AIP or VP carrier, you have to avoid a lot of unsafe or porphyrinogenic drugs ( see Napos list ) ; chemicals such as hormones , steroids , solvents , paints , etc ; foods such as alcohol , vinegar , garlic , peanuts and peanut butter-based food as many hard and spreadable chocolate, berries , grapes , soybeans , herbals , cabbage of all kinds, prunes, chamomile etcetera; substances like tobacco , coffee , cocaine , etc. , stress factors as contention or conflicts, hurry, traffic, bad or irregular feeding, variable or irregular habits, insomnia, extreme weather.
Moreover, it important to remember that some foods introduced in Europe after thr 15th Century (as ex . potato , tomato , aubergine) have a relatively toxic content, that could overcharge an already suffering citochrome CYP450.
Do not overcharge an already suffering citochrome CYP450.
“Hormonal factors are important. Women are more prone to attacks than men, especially during periods of hormonal change (for example, the luteal phase of the menstrual cycle, during the use of oral contraceptives, during the first weeks of pregnancy, the postpartum period ). However, pregnancy is not contraindicated.
Other factors include drugs (including barbiturates, hydantoins, other antiepileptic drugs and sulfa antibiotics, and certain reproductive hormones (progesterone and related steroids), particularly those that induce hepatic ALA synthase and involve cytochrome P -450. The attacks usually occur within 24 hours after exposure to a causative drug.
Diets low in calories and low in carbohydrates, alcohol ingestion and exposure to organic solvents, they can also worsen symptoms. Infections and other diseases, surgery, and mental problems they are sometimes involved. Attacks probably arise from different, sometimes unidentifiable, factors. Exposure to sunlight is a serious trigger for skin (and some systemic) symptoms in VP and HCP. ” (in absract by Merck’s Manual for professionals)
“The nutritional changes are increasingly recognized as factors that can lead to acute attacks of porphyria. However, the harmful drugs (such as barbiturates and sulfonamide antibiotics) and of steroid hormones, particularly progesterone, are important. Some women develop attacks during the second half of the menstrual cycle, when progesterone levels are high. Often an attack is due to a combination of factors rather than a single cause. For example, the attacks in women are more likely to occur due to a food incorrectness when progesterone levels are higher than in other periods. Improper diet also increases the likelihood that an adverse drug or alcohol will produce an attack. “(in absract by American Porphyria Foundation)
“In some women, attacks are clearly related to the pre-menstrual phase of the cycle and the doctor may need to consider a number of treatment options such as using special hormones to suppress the menstrual cycle for a 1-2 year period . If this treatment proves necessary, it must be done under close medical supervision and careful monitoring.
In the case of childbirth as a “surgery, you need to communicate in advance to the surgeon and the anesthetist that you have porphyria. You must use special anesthetic that is safe in porphyria. Patients with severe porphyria, particularly those who have repeated attacks, may need special dietary advice from their doctor and a dietician.
In some cases, patients with porphyria may occasionally need a drug to treat a serious disease, known to be at risk of provoking an acute attack or that you do not have accurate information because recently introduced on the market. In this situation, the physician after evaluation of all the risks, if necessary together with a porphyria specialist, may decide to prescribe a therapy under careful quality control.
People with acute intermittent porphyria must take great care with medication, as many chemical agents are capable of inducing an acute attack. It is important ALWAYS to check with your doctor before taking any medication or therapy. Among the drugs known to cause an acute attack are both common medicines and alternative treatments, tonics and herbal. Some drugs are considered suspect more than 100, but there are many other drugs available, so it is not difficult to find an alternative. ” (in absract by Epnet source – Information on porphyria in Italian)
- many potential trigger factors should be avoided: acute stress, dehydration, fasting or crash dieting, alcohol, estrogen, infections, chemical and pharmacological agents of various species, smoking, certain foods and exposure to the sun (only for patients suffering from cutaneous porphyrias or atypical)
- it is not recommended a negative caloric intake and a low carbohydrate intake, as iron supplements and intake of high amounts of fibers
- if you are taking any medication, whether porphyria risk must be verified on the appropriate tables published by Napos (The Drug Database for Acute Porphyria)
- a lot of chemical agents can have a particular porfirinogenica action. Better to avoid, as example, areas and environments where paintings are in progress as to pay attention to household products or for body use
- advised foods (not for porphyrinogenic direct effect, but because slightly toxic and overloading the cytochrome P450) could be – as example – tomatoes, potatoes, broccoli, mustard, raw onions, turnips, egg yolks, nuts, lemon and lime, molasses, sauerkraut, the shrimp, the cola, the chocolate, spices such as vanilla and pepper. Broccoli and spinach are also advised against because their broad leaves tend to collect chemical agents from the environment, as in the case of turnips and onions from the plot
- avoid soy products, because soy contains phytoestrogens, a natural estrogen, and at best those containing sulphites, as Tomato pastes, pulps and purees, Dehydrated, mashed, peeled and pre-cut potatoes, and frozen french fries; Grape, Pineapple, Dried fruits and vegetables; Fruit and vegetable juices and concentrates; Canned and frozen fruits and vegetables; Fruit fillings and syrups, gelatin, jams, jellies, preserves, marmalade, molasses and pectin; Sugar syrups; Condiments, for example, coleslaw, horseradish, ketchup, mustard, pickles, relish and sauerkraut
avoid high fructose syrups – often used in soda pop and sports drinks – because ingestion of high amout of fructose causes a close down of normal metabolism function.
This is a topic on wich we will return often. Stay tuned.