Medications in Australia for OI/POTS

This is a my attempt at a summary of medications available in Australia for OI/POTS. Contributions and corrections are welcome.

Beta Blocker
Summary: You might have to try this first even if others are more effective
Mechanism: selective beta-blocker
Usually prescribed for: hypertension (High BP)
Registered in Australia? Yes
PBS Listed? Yes
Why: Cheap, Long history, common medication
Why Not: may reduce blood pressure too much when supine, fatigue
IV Saline
Summary: Reportedly works great if a doctor is willing to give it

Mechanism: increases volume

Why: Cheap, works well
Why Not: infection, difficulty getting it outpatient


Provigil modafinil


fludrocortisone acetate
Mechanism: Synthetic version of aldosterone. Increases plasma volume by sodium retention.
Registered in Australia? Yes, R 54688
PBS Listed? Yes
Generic Available? Yes
Why: Cheap, long history, GP likely to prescribe
Why Not: Immuno-suppressant, steroid side-effects, should be refrigerated after opening

Last line

Only listed for completeness. These are either not registered in Australia, highly addictive, or are too expensive.
when all else fails
Registered in Australia? No, SAS only
PBS Listed? No
Why: Probably the most powerful known vasoconstrictor
Why Not: Specialist use only, $$$ (?), nasty side-effects?

Erythropoietin (EPO)

Mechanism: for unknown reasons in OI/POTS there is usually a deficit in the production of RBCs, and procrit is a recombinant hormone that triggers RBC production.
Registered in Australia? Yes
PBS Listed? Yes (authority needed), but not for OI/POTS
Why: Actually increases red blood cells.
Why Not: Injectable only, $$$$ ($1000+ per vial), black box warning, frequent blood tests needed



Beta Blockers I wouldnt say generally "works great for POTS and OI". Many doctors who have POTS patients eg one of my CFS specialist who is one of the most known CFS doctors in SA and is probably seeing the most CFS patients with POTS here, doesnt like giving his POTS patients betablockers for it as he's experienced from his past prescriptions of it for CFS and POTS, it doesnt often help most of his patients.


You also say GP is likely to prescribe fludrocortisone. Ive personally found GPs are VERY UNLIKELY to prescribe this for POTS, most GPs Ive found in SA dont even know what POTS is and arent even willing to learn about it. It took me 5-6 years to find one who was willing to prescribe for it and prescribe this drug. Specialists in POTS who are familiar with it thou, are are likely to prescribe it.. if you are lucky enough to find one. I think there is only one CFS specialist who knows much about POTS in Sth Australia. (Ive seen 7 different CFS specialists here and the others didnt even know what POTS was).
alot depends on what the gp is comfortable with, if they dont feel comfortable they may send u to a specialist and after that they seem comfortable writting repeats

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