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I have pulmonary artey hypertension & prescribed opsumit Is this med. correct for me?

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1969vtec 4 Dec 2015

I've been on Opsumit since July '15.
If your question is, does Opsumit "work", here's my layman's opinion:

In 5 months it has alleviated some of the chest pain and has allowed me to walk a little farther with less severe pain and breathlessness (I'm on 2 liters of portable Oxy 24/7) than before.

Objectively, my cardio says Opsumit has lowered my heart pressure (as measured daily by an implanted St. Jude's CARDIO MEMS wireless WiFi transmitter). I was in 80-90 range, now often see 50-70. Our ideal goal would be a consistent 30.

Summary: At $300 a pill, Opsumit seems overrated to me. But if I reach the goal the cost was worth it.

Recommend: Googling Opsumit and its' chief competitors (Viagra etc.) so you can then ask your cardio informed questions. Ask flat out, 'Is this drug CORRECT for me'? WHY is it better than _______?

On the internet literature Opsumit is tauted as the "Latest and Greatest" PAH Rx. My mixed subjective results suggest I'm glad I'm not taking the less efficient drugs! If anything changes I'll get back to this Forum. Good Luck

Sultana101 6 Aug 2016

Hi. Just found this site and saw this post. Please be aware thsy OpSumit IS NOT A COMPETITOR TO VIAGRA
Viagra (off label Sildenafil) viagrather is a PDE-5 drug. Helps body generate nitric oxide to dilate blood vessels. Opsumit is an ERA (endothelium receptor antagonist). It helps prevent an abundance of endothelial cells from attaching to the smooth muscles of the blood vessels and impeding blood flow. Generically, it is Macitentan. I just wantediluvian to let you know that they are drugs for different purposes. I am not a medical professional, but do have PAH. My Pulmonary pressure is in the 80s (very severe) and I'm on allall three target drugs used for PAH (IV remodulin (a prostocyclin ), sildenafil, and OpSumit.

Good luck with your PH. It's a tough cookie to deal with, but can be managed. Be sure you know everything you can about this disease. Its very rare, and most medical professionals are not very familiar with it.

1969vtec 6 Aug 2016

To Sultana 101:
I didn't know you could take all 3 types. My cardio didn't make a distinction among them. In fact, he derided Viagra as not being as effective as other drugs. We opted for Ops because he'd tried the others and wasn't too impressed.

I'm sorry to hear you're at 80. Do you use oxygen? I'm now at a point where I can't use meds to go lower due to fainting fears from too low BP. But although numbers are lower, chest pain and shortness of breath has gotten worse--even on the Ops and using O2 24/7.

We're starting cardio rehab next week but Medicare won't pay but 90 days. Do you get depressed? I'll ask doc about taking all 3 types. Thanks for your comments Sultana.

Sultana101 6 Aug 2016

Hey 1969 vtec -

Yes, you can take all three. There are three physiological targets Dr's can address with the available drugs. I'm on all three. Increasingly, doctors are using Combined therapies meaning they'll use two or all three drug types to address the PAH.

I am assuming that you are seeing a PH specialist. If not, please do so right away! A PH specialist should be an integral part of your medical team. I have my local pulmonologist my local cardiologist and a pH specialist who all manage my care.

In my case, my pressures have pretty much stayed the same but I haven't gotten any worse. As you know this is a progressive disease. So while I may not be showing an improvement, it could be that the meds are preventing it from progressing further. In otherwords, the meds may just be helping me keep up with the progression of the disease.

1969vtec 16 Oct 2016

Update: I'm still on Opsumit but have gotten more breathless since posting the above. If it's helping, I must really be going South!
Even on 2 liters of my O2 I'm only good for bringing in a few grocery bags at a time. PAH just beats me up. It makes me avoid some activities and do others poorly. Sorry for whining folks.

Started cardio rehab and incrementally I'm taking baby steps on the machines. Trying to gage workout to accommodate my portable Ox Concentrator's supply.

Run out of O2 and you're screwed for that walk out to your car... the Ox depletes more quickly when exercising, so the usual cues are no longer any good. Relearning when to quit to have any Ox left.

Any tips out there on handling Ox situation? Quitting rehab is not an option.

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