When Should I feel Better After Starting PAH Treatment?

This is a very important question.   Patients with PAH are often very frustrated by feeling poorly, often for one to two years prior to formal diagnosis with PAH.  Once the secure diagnosis is made and treatment is started there is a sense of urgency for both patients and doctors to see tangible evidence of improvement.  Improvement is measured in many different ways.  You may … [Read more...]

New Option for Sub-Cutaneous Drug Delivery Coming Soon

The SteadyMed PatchPump SteadyMed is a new company to the PAH disease state.  They have a novel small subcutaneous pump system (PatchPump) that is being studied for the delivery of Treprostinil (the generic version of Remodulin).  The version of Treprostinil that is included in the pump is called Trevyent and is free of preservatives.   The company just recently reported a … [Read more...]

Update on the Implanted Remodulin Pump

This week we learned that the much-awaited arrival of the Implanted Pump System for Remodulin would be further delayed.  The FDA did not grant Medtronic and United Therapeutics approval.  Details are scant but the announcement indicated that the device might be approved in the beginning of 2018. PAH Patients and doctors alike were let down by the delay.  The delay does not … [Read more...]

Update on Caring Voice Coalition: January 13, 2017

Caring Voice Coalition will reopen for grant applications on Monday January 16th at 9am Eastern time.  Patients who have yet to receive grant support should call and keep calling. You should also try and connect with Caring Voice by email and on their website. We have had encouraging news from several of the drug manufacturers that they are working with the federal … [Read more...]

Looking Back at 2016 in PAH

2016 has been a busy year for PAH.  There was exciting progress and some disappointment as well.  Reata Pharmaceuticals launched their phase 3 study of Bardoxylone Methyl in connective tissue disease related PAH (The CATALYST Study) after showing promising results in their phase 2 study.  Actelion has started their phase 4 study (TRITON) comparing triple vs double up-front … [Read more...]