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Can anyone write to me about the side effects that they have experienced with Opsumit or Ambresentan?
My dr wants me to go on one of those meds,, and I am afaid of the liver problems, anemia, heart failure or edema and water retention and gaining weight.
The drugs also seem to help patients with pulmonary pressure and make them feel better, so I would like to get as many patients imput as possible.
Thank you,
Joan
Answer Summary
Members shared their experiences with Opsumit and Ambrisentan for pulmonary arterial hypertension, with many reporting positive results in... Read more
I take Amber, Tadalafil, & subq Romodulin, and tons of other stuff. I tried Uptravi. My airway is to fragile. I have had a “severe chronic cough” since 2017. The oral medication had minimal side effect. The Romodulin is a whole other thing. Continuous nausea, chronic vomiting, explosive diarrhea, leg pain, jaw pain, advanced my anemia, headache, very restless sleep. Overall body pain. The site pain is awful. I have to change my site location every few weeks. The site pain starts over. *I did not have site pain with IV Romodulin. Romodulin has saved my life. My pressure was extremely high. After 2 years, my pressure came down to a manageable place. I was able to get off of it. I continued with oral RX. In about 6 weeks my pressure shot up. I had to get back on Romodulin. I have not had new work up yet. I have been on & off HOSPIC. I am currently on Palliative care. Someone is with me 24/7. *for the record. I am grateful. My home health care person is awesome. I hate having a baby sitter.
This is my experience. Everyone is different. My daughter was diagnosed @ age 18 months. We were given a bleak prognosis. She is now 33. Living her best life.
Find a great care team. Therapy for post diagnosis makes a huge difference. Never give up.
JoanBrownstein:
I have been on Ambrisentan since my diagnosis in 2012. I have not had any side effects from the drug. I have blood work monthly to monitor liver and kidney functions as well as a general blood monitoring. Every 6 months I have BNP...Brain Natriuretic Peptide..testing to measure the amount of proteins in the bloodstream. This gives numbers that correlates to Congestive Heart Failure. This is also a blood test so it is done with my regular blood draw. When your heart has to work harder it makes more BNP. I also follow a very strict no salt diet and limit my fluid intake to 48 ounces a day which means very little edema, if any. I also take Furosemide every day. I had edema before taking Ambrisentan so that was not the cause.
I also watch my weight very carefully and am well within my BMI. Normal weight. I eat well and in turn feel well.
Maintaining a healthy weight makes living with Scleroderma and PAH much easier.
I credit Ambrisentan with keeping me as well as I am, in addition to Sildenafil. My PAP...Pulmonary Artery Pressure was 88 on diagnosis and is now 44. So, it has certainly helped me.
My quality of life is very good and I don't even think about PAH and Scleroderma as hindrances. They are just part of my life and over the years I have made adjustments to live my best life possible. I concentrate on what I can do, not on what I cannot do.
I also trust my PAH Team completely as well as my Rheumatologist/Scleroderma Specialist. I do what they ask of me and doing that has gotten me to where I am today. They are looking after my best interests 100%. 😊
I requested to be taken off the Ambrisentan because my ankles swelled quite a bit. When I started using Opsumit, there was minimal swelling that stopped within a week. I have only experienced low red blood cells with both Ambrisentan and Opsumit. Since changing to Opsumit I am able to control the low hemoglobin and get it normal. So far no blood transfusion.
I have received Grants for 3 years from different organizations.
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