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A myPHteam Member asked a question 💭
Leesburg, VA

Any suggestions on when, how to take it. With food, without? Also take several other meds in AM.

September 23
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Answer Summary

Members shared helpful tips for starting Opsumit, with several noting it is best taken in the morning, either before or with food, and that... Read more

Members shared helpful tips for starting Opsumit, with several noting it is best taken in the morning, either before or with food, and that some dizziness when changing positions is common as the body adjusts. A recurring theme was sinus congestion as a frequent side effect, with one member recommending a natural saline spray for relief, and another noting congestion lasted about four months before improving. Several members also raised an important point about confirming a PAH diagnosis through Right Heart Catheterization wedge pressure results, as Opsumit may not be appropriate for all PH groups.

A myPHteam Member

@A myPHteam Member Are you sure you are PAH and not PH Group 2? You mention all your care is through a cardiologist. If you have PAH you definitely need to be under the care of a PH specialist. If you are in Group 2, then Opsumit could be harmful for you.

To be certain, look at your report from your diagnosing RHC. Check your PAWP (Wedge). If your number is over 15, you are definitely Group 2 and should not be on Opsumit. If it is 14 or 15, you maybe should be retested with a Fluid Challenge added.

September 24 (edited)
A myPHteam Member

Been on both over a year now. At first you may feel light headed as your body adjusts the pressures in your body with the med, ( mine did). I still get dizzy easy ( my husband will tell you Mines natural, it's not, lol) when I move to quick or change positions ( from sitting g to standing).
It fid also make me anemic and I had to have two infusions. Im good now on iron.
I take mine both in the morning.
Good luck and god bless

September 23
A myPHteam Member

@A myPHteam Member I take it at bedtime.

October 8
A myPHteam Member

I take Opsynvi which has both medications in it. I take mine when I first get up before breakfast. Then I eat within a half an hour. When I first started taking it my biggest side effect was sinus congestion and that lasted for four months but then it passed. During the first two weeks I had slight dizziness three or four times but I’m not certain that was because of Opsynvi as I also have POTS.

October 2
A myPHteam Member

Good luck with the Opsumit. I was on it briefly in 2024 when I had been misclassified as being Group 1. The only side effect I had with it was stuffed sinuses. I used Arm & Hammer all natural saline spray with Eucalyptus to relieve that.

September 23 (edited)

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