Wednesday, April 20, 2016

From Executive Director of the American Porphyria Foundation Desiree Lyon: Medical Moment: MEDICAL MOMENT~

From Executive Director of the American Porphyria Foundation Desiree Lyon:

 Medical Moment: MEDICAL MOMENT~

 I have had questions about Panhematin related to an article from 1970. First, the hematin today is not the same as forty years ago. Next , today’s Panhematin was FDA approved in 1983 and has not had one death or viral report to the FDA in these many years. People can have side effects, nausea, headaches, flu feelings etc. But doctors continue to prescribe it and patients continue to take it because it stops attacks and the attack is far worse than the treatment. 
For those who have never had it , I am sure our friends here will tell you about it. It is given by infusion. I describe it by saying it looks like crank case oil. It is a greeny , blackish , swamp water looking semi fluid but it works like gold. I howled laughing recently when I read that some people accused me of trying to promote Panhematin because I was paid by the drug company. First, Panhematin is the only treatment we have to stop attacks. Glucose can help but when in a crisis, it is not suggested to stop an attack. so, of course I will tell ppl about it as exec dir of the apf. Next, no drug company pays me and to tell you the truth, it costs me to work for the APF. I went twenty plus years without a salary….so if these silly folks want to do my job, they will find no drug companies give you anything. the apf does take donations but if they come from industry, they are unconditional grants. 
If you have questions re Panhematin, you can pm me or ask the group. But be assured, an article from 1970 is not relative today if ever. Forward Ho !!! 

read about Panhemtin here:

Panhematin® is a treatment for the acute porphyrias manufactured by Recordati Rare Diseases in Lebanon New Jersey. It 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.
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 car
bohydrate 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.
                                             "Remember....Research is the key to your cure!"

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