Pamidronate infusion long term side effects - Paget’s Support

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Pamidronate infusion long term side effects

Potzerella profile image
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I had 2 infusions of pamidronate over 2 days in Aug 2019 for a stiff knee and Fibrous Dysplasia. I was told it would help strengthen my knee, the Fibrous Dysplasia was never so bad that a few ibuprofen wouldnt cure. After 3 months my hair began to thin, after 6 months my scalp became itchy and would burn sometimes. After 7 months I began to have dizzy spells/brain fog tiredness. After 9 months my eyes dried and tinnitus set in. Biopsies on my scalp have been inclonclusive and doctors are reluctant to make the connection with pamidronate despite alopecia being listed as one of the main side effects of biphosphates. Now 18 months later my once thick hair is now wafer thin and still thinning. Alarmingly I have discovered this poison is absorbed into the bone and is released gradually over many years, which i assume is why my hair has not stopped thinning and i am still experiencing the side effects. Does anyone have any information as to the concentrations released back into the blood stream and for how long it may last?

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