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Anyone Taking Epogen/erythropoietin- Dosage?


persephone
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Hello all. I'm having the worst POTs crash I've had in at least a year- you know the drill- the crushing chest pain, the dizziness on standing, the pain in the ribs, the dizziness, the headaches. Awful.

I've been taking EPO for 3 years and I wondered if I could ask some of my friends across the pond who are also taking it a few questions.

Do you adjust the dose when a flare comes? What is the standard dose for you guys?

As far as we know, I am the only UK POTS patient taking EPO- and I'm no longer on speaking terms with the consultant who prescribed it for me initially (long story involving Stevens-Johnson syndrome and ineptitude). I have been on the same dose for 3 years- 2000 units.

I gather this is very low, and I am wondering if my dosage needs to be changed. I will be contacting my POTS consultant, Prof Mathias about this, but I know he doesn't prescribe it, so I guess I'm just looking to hear about your different experiences

NB: I am not seeking medical advice, just insight into others' experiences with this drug.

Thanks all x x x

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