I have a request as I am having difficulty finding any information that lists any other possible side effects of Panhematin aside the mild anticoagulant warning and to make sure the patient has a definite porphyria and then the listed phone number--but nothing at all about anything even remotely similar to the hell Id experienced and it was a definite reaction and I had been tested through APF as a definite HCP patient and I was even tested again right before my Panhematin treatment. I had been given Panhematin prior to surgery and I was completely debilitated within hours of my first dose. I was unable to sit up, I couldnt eat, I had to be carried to the bathroom and unable to move at all without assistance and also had severe respiratory issues this all lasted for a week after only ONE Panhematin dose so it is with great hesitation that Id want to have treatment ever again. Its literally the only way and the best way to describe how I felt was itd kicked in the most severe porphyria attack of my entire life, as though every possible physical symptom was in the highest level of pain and hell possible. I suffered an entire week like this and it was so severe that my surgery had to be postponed until I could move and function again. I really thought I was over that my life was over and that was going to be my life as I didnt regain my normal mobility and decrease in pain for a weeks time. The doctor that treated me with Panhematin was one of the top porphyria specialists in the world-- he is one of the first to treat porphyria in the states and had even treated patients before with Panhematin and he said my case was very unusual but surely a reaction to the Panhematin. I had arrived to my first treatment appointment at the hospital walking in without pain and able to eat, breathe normally and function all my vitals were healthy--but by the time the first treatment was done, I had to have a wheel chair because I couldnt even stand up on my own and then by that night I was carried into an ambulance because I was unable to move or breathe without severe pain and unable to swallow even water and vomiting etc. Aka the worst porphyria attack of my entire life hit me with full force in every possible way. I really feel there should be more caution listed with the information about Panhematin as every patient is different. Can someone please direct me to any more detailed information about other possible side effects or precautions with Panhematin? Has anyone else had an unusual, rare, odd and or terrible reaction to Panhematin? Im very worried about ever being treated with Panhematin again before surgery because of this frightening and devastating experience. But yet my doctor insists because its listed everywhere as safe and theres nothing much about any side effects or dangers etc. But how is anything not without serious side effects? Even drinking too much water is dangerous..........Right? Shouldnt there be a more cautionary statements or possible side effects listed on the same page with the positive effects of Panhematin? Im also asking if anyone else has had any odd reactions to Panhematin as this is extremely distressing as now Im scared to try it again after my experience the first time with just ONE dose. Its really quite scary and I hope some of us porphyria patient friends can shed some light and perhaps provide a link to any possible side effects or other precautionary measures for treating porphyria patients with Panhematin. Thanks everyone and I hope youre all doing well!
Posted on: Sun, 12 Oct 2014 05:57:04 +0000
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