Flolan User Reviews

Flolan - User Reviews

Flolan User Reviews

Now you can gain knowledge and insight about a drug treatment with Patient Discussions.

Here is a collection of user reviews for the medication Flolan sorted by most helpful. Patient Discussions FAQs


    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: 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: 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!!

    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: 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

    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)

    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.

    Related Reading: hot flashes

    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: 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: Walterick1949@yahoo.com, 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!


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