Reviewer: AIP, 55-64 on Treatment for 5 to less than 10 years (Patient)

Comment:
I received this medication monthly for 2 years before switching to Normosang. Normosang, which I was treated with for the next 8 years is considerably better at managing acute attacks than is Pan Hematin. Unfortunately, Normosang is no longer available in Canada even though it worked a lot better and was comparatively less expensive. At last dose in 2019 Normosang cost $876 CDN vs $10K CDN for Pan ... Show Full Comment

Comment:
I received this medication monthly for 2 years before switching to Normosang. Normosang, which I was treated with for the next 8 years is considerably better at managing acute attacks than is Pan Hematin. Unfortunately, Normosang is no longer available in Canada even though it worked a lot better and was comparatively less expensive. At last dose in 2019 Normosang cost $876 CDN vs $10K CDN for Pan Hematin in 2020.
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Reviewer: DUMAS, 45-54 Female on Treatment for 1 to 6 months (Patient)

Comment:
I required a port be placed in me so that the drug could be administered. There were also very few institutions that could carry this drug making the logistics of treatments difficult. Overall this drug worked very well in reducing my overall pain from Acute Intermittent Porphyria. I am taking almost no Dilaudid to relieve my pain and feel like joining the world again. It was almost 8 years si ... Show Full Comment

Comment:
I required a port be placed in me so that the drug could be administered. There were also very few institutions that could carry this drug making the logistics of treatments difficult. Overall this drug worked very well in reducing my overall pain from Acute Intermittent Porphyria. I am taking almost no Dilaudid to relieve my pain and feel like joining the world again. It was almost 8 years since my first AIP attack and my attacks were getting progressively worse since I became Peri-menopausal without these treatments I would be unable to enjoy any life at all.
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