Slideshows Images Quizzes

Copyright © 2018 by RxList Inc. RxList does not provide medical advice, diagnosis or treatment. See additional information.

Flolan

USER REVIEWS

Comment from: TN Girl, 35-44 on Treatment for 10+ years (Patient) Published: October 16

Flolan saved my life. When I was diagnosed, I was a class 3-4. My oxygen at rest was 82 percent and I could not walk up a flight of stairs without passing out. My oxygen now, without O2, is 98 percent and I can do light exercise. The side effects can be bad, but I have learned to live with them. I have jaw pain when I first start to eat, diharrea, and leg pain if I stand in one place too long (I use a wheelchair to go shopping). I am on 11 of the 1.5 vials of Flolan. While having to mix medication and wear a pump 24/7 was a major life change, it has all been worth it. It is my new normal, and everyone around me has been very supportive.

Related Reading: flolan

Comment from: [email protected], 55-64 on Treatment for less than 1 month Published: April 20

Flolan was given to my husband in April 2008, but he was already getting close to end stage pulmonary hypertension. It seemed to help initially, but then an RN was told to administer a sleeping drug. He did so by interrupting the Flolan for about 5-6 minutes. This is unacceptable. Flolan must be given on a continuous basis. My husband may not have lived because of Flolan, but we know that he died because of disruption of the continuous flow of the medication. Don't let this happen to you or someone you love. Insist that they do not disrupt the continuous flow of Flolan!

Related Reading: pulmonary hypertension

Comment from: teacher, 25-34 on Treatment for 1-6 months (Patient) Published: February 27

Floan has saved my life, too. As a PH patient (secondary to scleroderma), I couldn't walk over about 20 yards without getting out of breath. I NEVER took the stairs and had trouble doing small tasks like dressing and showering. Now, with my Flolan, I live a really normal life. I work 50 plus hours as a high school teacher. I truly believe I have my life back thanks to this medication. Although it's a total drag, mixing, dressing, etc., IT IS SO WORTH IT!

Related Reading: scleroderma

Comment from: dcbeauty25, 7-12 on Treatment for 1-2 years Published: December 01

My daughter was diagnosed at age 5 with PH. We started out with just oral medication that was giving us no improvement, we moved to remodulion sub q pump and she couldn't do that either so we switched to Flolan and now 5 years later we finally received our 1st good report from Echo Test and Clinical Test. I am looking forward to the new Flolan that does not require to be on ice.

Comment from: krissy3473, 25-34 on Treatment for 2-5 years Published: July 31

Flolan had worked great for my Mom when she was on it. She had the jaw pain, but it was tolerable for her. She later had an organ transplant, and her PAH numbers had gone lower in result. They then weaned her off of Flolan, that is when things got worse. Heart valve disease, still PH, and Atrial Fibrillation. All of which can be caused by Flolan. She recently had heart valve replacement surgery and 1 month later is still on the ventillator because of her pulmonary hypertension. Moral of the story is if its working, keep it going....it's worth it! But also be aware of dangerous side effects.

Comment from: mekajhwjhgj7, 25-34 on Treatment for 5-10 years Published: January 18

my cousin has pulmonary htn. they said that he wouldnt live past 3, he's now 15. He recently got off flolan and o2. the md's said flolan was experimental for a child his age but we believe it got him this far. he's doing GREAT!!

Related Reading: flolan

Comment from: lady in kc, 45-54 on Treatment for 2-5 years (Patient) Published: May 14

I AM A WIFE OF 35 YRS, MOTHER OF 2 . LIVING A NORMAL LIFE, WHEN I WAS DIAGNOSED WITH STAGE 4 PPH. WAS PUT ON FLOLAN AND RIGHT AWAY NOTICED A DIFFRERANCE.. AND AFTER HEARING DIFFERANT COMMENTS FROM PEOPLE THE ONE FACTOR THAT I HAVENT HEARD FROM HERE IS FAMILY SUPPORT.. IF YOU DONT HAVE THE SUPPRT FROM LOVED ONES I CANT IMAGINE GETTING THROUGH IT ALONE. I NEVER EVEN KNEW WHAT A NG/KG/MIN WAS UNTILL FLOLAN. AND ALTHOUGH I AM ON 4 LETTERS O2 AND USE A SCOOTER ON OUTINGS I HAVE TO SAY I KNOW WHAT IS MEANT BY NEVER TAKING THINGS FOR GRANTED.. WHO THINKS OF HOW HARD IT IS 2 BREATH / UNTILL YOU "CANT" AGAIN THANKYOU DRs. THANKYOU FLOLAN, AND A EXTREEM THANKS TO (MY FAMILY AND FRIENDS)

Related Reading: flolan

Comment from: phmom, 35-44 on Treatment for 5-10 years Published: January 24

my 6 year old son started on flolan at age one for ph. To this day, he is a symptomatic and lives a perfectly normal life with the exception of the pump. He even surprises his doctors

Related Reading: flolan

Comment from: vikingscool, 25-34 Female on Treatment for 5-10 years (Patient) Published: January 24

This is best life-saving drug to Pulmonary Hypertension. I using Flolan since February 2001. I had jaw pain when I started eating, then it goes away when I continue eating. Rarely, I have been flushing or hot flashes up to 5 times per year. Yet, Flolan is very worth life-saver drug.

Comment from: TDK, 45-54 on Treatment for 1-6 months Published: May 28

I am currently caring for my mother who was diagnosed with PAH and RH failure 18mths ago. This is our last hope and so far it seems to be working the worst part is being responsible for the administration of the Flolan and ensuring there are no air bubbles. Family support is essential to get a family through this type of commitment.

Comment from: Oldman49, 45-54 Female on Treatment for 1-6 months Published: December 06

Father of 15 yr old girl. Diag jan 98,stared chest line in May, discharge to home with FLOLAN. Usual jaw pain,flushing,hot flashes,and on O2. Monitored pt levels daily. July seemed good,,color better,trouble with water retention in upper torso. Cardiac arrest on July 4th. Never lasted for s heart lung transplant which was the goal back then.

Related Reading: flolan

SLIDESHOW

COPD Foods to Boost Your Health - COPD Diet Tips See Slideshow
References

Medical Editor: John P. Cunha, DO, FACOEP

Health Solutions From Our Sponsors