Panhematin® from Recordati Rare Diseases in Lebanon New Jersey, is a lyophilized form of alkaline heme that has to be reconstituted immediately prior to administration. Panhematin® should be infused into a large peripheral vein. A large central line or port may be used, if available.
Doctors administer Panhematin® to correct heme deficiency in the liver and repress production of porphyrin precursors. Panhematin® almost always normalizes porphyrin and porphyrin precursor values. Three to four mg/kg of Panhematin® given once daily for four days early in an attack produces a highly beneficial effect in most patients. Commonly noted are decreases in pulse rate, blood pressure, abdominal pain, as well as decreased levels of urinary porphobilinogen (PBG). These effects can occur within a day.
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Watch this video to learn about using Panhematin® to treat Acute Porphyria.
Panhematin® is the only commercially available heme therapy in the United States. (Heme arginate is another preparation, but is only available outside of the U.S.) While a high carbohydrate diet is recommended for patients with porphyria, it is not regarded as highly effective by itself. Intravenous glucose therapy is a treatment option for mild attacks. When heme therapy was introduced as a treatment, it was recommended that it be initiated only after several days of glucose therapy was unsuccessful.
Today, physicians experienced in treating patients with attacks of porphyria recommend early use of Panhematin® rather than waiting to see if glucose alone will be of decisive help. However, not every patient who experiences an attack of porphyria needs Panhematin® since mild attacks may well respond to glucose alone. But a specialist's advice and consultation may first be obtained. This is recommended also for prophylactic infusions of Panhematin® given to prevent attacks.
Many experts recommend reconstituting Panhematin® with albumin as this makes it more stable. This helps prevent phlebitis and an anticoagulant effect. Like Panhematin®, albumin is a biologic product, which is approved and regulated by the FDA.
In addition to Panhematin® therapy, supportive measures such as nursing care, attention to electrolyte imbalance, and sufficient pain medication help in treating acute attacks.
During treatment, attention should be given to salt and water balance. Harmful drugs should be stopped. These include barbiturates, sulfonamide antibiotics, and many others.
For medical information questions (for healthcare professionals only) regarding Panhematin, please call 1-888-575-8344. For safety or adverse event related questions, please call 1-888-575-8344. If your physician would like to speak to a porphyria expert who has expertise in using Panhematin®, the American Porphyria Foundation (APF) will gladly provide that information. Call us at 713-266-9617.
Read Member Stories that include experiences with Panhematin®:
- Carlos Johnson "..it was July of 2011, and I was in a hospital in Philly. There it was a doc that knew about my porphyria (thank God), and he decided to give me the Panhematin. I swear by the second day of having the infusion, I began to feel a whole lot better, better than I had felt in years."
- Tony McLaughlin "Since 1993, I was relatively stable apart from fragile skin in the summer, that was until 2010 when I had a severe attack exacerbated by dithering doctors who didn't believe all my symptoms were due to Porphyria. They kept treating me for other things until my wife stepped in and read them the riot act. They quickly changed their tune and handed me over to a different team who got the Heam Arginate for the UK (in USA Panhematin) and saved my life. However, because of the delay, I'd developed all sorts of symptoms that took time to sort themselves out."
- Dr. Lisa Kehrberg "Very soon after diagnosis, a PICC line was placed and treatment with Panhematin began. I felt so much better after only a couple of infusions. I was close to death by the time I was diagnosed and certainly would not be alive today had I not met my internist and had I not received Panhematin timely."
- Amanda Boston "I had the most amazing privilege participating in the “7203: A double-blind, randomized, placebo-controlled, parallel group trial on the efficacy and safety of Panhematin™ in the treatment of acute attacks of porphyria” research study."
- Charles Johnson "... the frequency of the attacks rendered me unable to keep a schedule and the pain left me unable to work. Now that I am on Panhematin every two weeks and the attacks have been under control, I am hopeful that I can return to work soon."
- Cheryl Black-Blair "The procedure itself is similar to IV glucose treatment—certainly no more uncomfortable ... I chatted on the phone through my treatment, and by the time I fell asleep I felt a definite lessening of the pain."
- Amy Chapman "Dr. Anderson spoke with the physician treating me and advised him on how to care for me. ... I walked out of the hospital feeling so much better, and smiling. I was a new person. Panhematin works so well for me!"
- Desiree Lyon "I was only seventeen years old when I suffered my first attack of porphyria. The onslaught of pain was rapid and vicious."
- Jessica Melton "Jessica receives Panhematin regularly to keep her symptoms at bay ... she has been feeling so well that she is now getting her own business off the ground."
- Megan Railling "Megan was a typical healthy teenager until, for no explainable reason, she became ill with persistent vomiting, abdominal symptoms, bowel dysfunction and major thirty pound weight loss in six weeks. ... Within three months [of beginning Panhematin infusions] Megan was walking and feeling much better."
- Judy Snyder "I have not had to be hospitalized for an attack in a long time! The Panhematin treatment seems to work for me. I don’t believe I would be here today it weren’t for this drug."
- Steve Stevens "My hematologist suggested that I be put on a regimen of monthly Panhematin treatments ... I am 55 and have learned not to take life for granted. I know there is no cure for VP but I am trying not to let it dictate my life."
- Kim Willis-Bregman "Kim's story is really about the struggle of living with AIP for years with no support network, and about the frustrations of not being able to tame the beast until our lucky break with heme therapy."
- Megan Parrish-Davenport "The events that led to Megan Parrish Davenport's diagnosis were typical of others in many ways but with an added twist. Since she had a myriad of symptoms with no medical reason, she was sent from doctor to doctor. "
To learn more about Recordati Rare Diseases Inc., visit www.recordatirarediseases.com.
|Preparing Panhematin® for infusion|
Although there have been no controlled studies, the results since the first report in 1971 are impressive enough to advocate the early use of Panhematin® for porphyric attacks. When Panhematin® is given late in an attack, less benefit may occur.
Although it is generally agreed that the outlook for patients with porphyria has improved, an attack can still be life threatening. Respiratory insufficiency may require use of an artificial respirator. Therefore, porphyria attacks should be treated as early and effectively as possible. Fortunately, in patients with known porphyria, many attacks can be prevented. However, some patients may have an occasional attack even if they are careful in their lifestyles. And although prophylactic use of Panhematin® to prevent attacks has not been formally studied, Panhematin® is widely used in this manner for patients known to have acute porphyria and attacks that recur frequently.
Although Panhematin® has few side effects, it does act as a mild anticoagulant. Thus, concurrent use of other anticoagulants such as heparin or Coumadin® (warfarin) should be avoided. Panhematin® may also produce superficial thrombophlebitis, especially if infused into a small vein. Panhematin® is less likely to produce phlebitis if it is mixed with human albumin before it is given. Before Panhematin® is used, it should be clear that the patient indeed suffers from one of the acute porphyrias (AIP, HCP, VP, ADP) and that the patient's symptoms are due to an acute attack. Panhematin® therapy may not be indicated unless the diagnosis of acute porphyria is proven by a marked increase in urine PBG.
Customers can order through their primary wholesaler or via ASD Healthcare.
Shipments will be delivered in a shipping box from ASD Healthcare via UPS Next Day Delivery and may be expedited for an additional cost.
Hospitalization is often necessary for acute attacks. Medications for pain, nausea, and vomiting, as well as close observation are generally required.
A high intake of glucose or other carbohydrates can help to suppress disease activity and can be given by vein or by mouth.
Attacks are often precipitated by low intake of carbohydrates and calories in an attempt to lose weight. Thus dietary counseling is very important.
Premenstrual attacks often resolve quickly with the onset of menses. Hormone manipulations may prevent such attacks.
Acute porphyria is particularly dangerous if the diagnosis has not been made and if harmful drugs are administered. The prognosis is usually good if the disease is recognized and if treatment and preventive measures are begun before severe nerve damage has occurred. Although symptoms usually resolve after an attack, some patients develop chronic pain. Nerve damage and associated muscle weakness can improve over a period of months or longer after a severe attack. Mental symptoms may occur during attacks but are usually not chronic.
Wearing a MedicAlert® bracelet is advisable for patients who have been diagnosed with porphyria.
Anderson KE. The porphyrias. In: Goldman L, Ausiello D, eds. Cecil Textbook of Medicine. Philadelphia, Pa: WB Saunders Co; 2004: chap. 223.
Bonkovsky HL, Healey BS, Lourie AN, Gerron GG. Intravenous heme-albumin in acute intermittent porphyria: evidence for repletion of hepatic hemoproteins and regulatory heme pools. Am J Gastroenterol. 1991;86:1050-1056.
Data on file, Recordati Rare Diseases, Inc.
What is the Recordati Rare Diseases Reimbursement Support Program?
The Recordati Rare Diseases Reimbursement support Program is a free service available to patients, caregivers, medical billing staff, healthcare providers, and others who have questions about insurance coverage and reimbursement-related issues.
What does the Recordati Rare Diseases Reimbursement Support Program offer?
The Program offers comprehensive assistance for insurance-related issues:
- Billing issues – Contact the hotline for assistance obtaining appropriate billing codes required on medical claims or if you need additional documentation to submit with your claims
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