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Experiences with Opsumit
Hey guys I am going into a new phase of my PH journey. Ever since I was diagnosed with PAH in mid 2013 I was only on 1 medication 2x a day. I felt very lucky after hearing about many who had many more medications. Well over the last year or so I have been feeling more tired and out of breath. I am one to down play my health situation my whole life because others have made it such a big thing (one of the down falls being one of two know people in the world with my syndrome). I do share the truth of what is happing with me I just wait until my regular scheduled appointment. Also with Covid I have done my best to stay away from places so I don’t catch it or worse bring it to my elderly (84 & 82) parents who would most likely not far well. Anyway I digress, during my yearly visit I explained my symptoms, along with my 6MW results and a right heart cath we changed my medication to Sildenafil with a diarrhetic, later adding another diarrhetic that helps the heart function better at the same time. After the first week of feeling like I was having a heart attack while getting used to the sildenafil I was doing pretty good. Once that regulated I went in ( first in person appointment in 2 1/2 years due to the covid precautions) and they said they saw on the right heart cath that my PAH has progressed and want me to get on Opsumit. After reading up on it I am hesitant due to some of the side affects and cost. I do feel like I probably need it or something cause I still have shortness of breath when walking up stairs or trying to exercise. I see a lot of people who get put on IV treatments right when they are diagnosed and I am happy I have not had to do that yet. I am going through the process of figuring out the cost and all that jazz. Our family has never allowed cost of a treatment or test affect what we do, we have a motto ” we will figure out how to pay we just want the best treatment possible”. I know there are financial aid and other help available so it will work out. I am just interested who is or has been on Opsumit and what has your experience been? I know I gave you a bunch of information thats not really relevant but at least you had something to read for a few mins. 🙂 I look forward to the wisdom shared by this great group, thanks in advance!
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10 Replies
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Hi @codydaman, and welcome back. I hate to hear that your PH has progressed. I have been on Opsumit in the past and created a post with some information that you may find helpful here.
You are right; we do what’s needed to pay for it when we need treatments to improve our lives. Here’s another link to a topic where we discuss some options that may help with copay assistance. Hopefully, you will find these sites helpful. Please let us know how we can best support you.
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Hi Jen, Colleen and fellow travellers,
I have been on Opsumit since diagnosed 15 months ago with severe IPAH. It has been a miracle but there are side effects that your MDs have to monitor closely. I had anemia so I needed to go for 2 transfusions but this is fine for now. I also have had abnormal liver enzymes which they are monitoring to determine if it is the Opsumit or something else. It is a process of elimination when many of us are on so many other drugs in addition to Opsumit. I also have the usual symptoms (congestion, headaches). All of this is a small price to pay for being able to walk to my front door, up 13 steps, and not collapse inside. I think it is also worth considering what other steps you can control (like exercise) and make it a personal priority in front of everything else you have to do. This is not easy some days when the last thing I want to get on is my stationary bike. I don’t keep a gratitude journal but every day I find something during the day to call out to God, acknowledge the beauty around me and thank Him for being alive. If I somehow get to bed without acknowledging God, I think about it and always find at least 1 thing I neglected to notice during the day. This becomes easier and easier and adds to one’s well being all around. Even if you don’t believe in God, I am certain there are people in your life who have given you support and love, and you will find it most comforting to acknowledge them.-
@mgnorwood thank you so much for sharing your experience and advice. I especially appreciate how you pointed out that meditating on the positive people and moments in life is something anyone can benefit from, no matter what higher power they do or do not believe in.
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@codydaman we haven’t heard from you in a while so I was excited to see that you posted an update – then I read it. I’m so sorry you have been experiencing PH and symptom progression.
I dug around the forums and found another discussion about Opsumit that might help you. Here is the link: Do You Have Experience Taking Opsumit ( Macitentan)?
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I hope Cody doesn’t mind that I’m resharing a bit of his journey.
Cody participated in 30 Days of PH in 2020, In it he talks about his sister Tonya, who also had PH. I think the last sentence of his story will inspire you to go back and read all of it. “Tonya opened the doors so I could walk through them. Because of her, I am still alive. I hope to be able to do the same for others.
30 Days of PH: Surviving PH and Carey Fineman Ziter Syndrome
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Thanks, @colleensteele, for sharing the 30 Days of PH story that @codydaman shared. This was helpful and a reminder about his journey. I’m sorry about the loss of your sister, Tonya, Cody, but so happy that she “opened the doors” for you.
I’m happy that you hopped back on and shared an update. Please let us know how we can best support you. Don’t stay away so long.
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G’Day Cody,
Dont know if side effects are different between the sexes but from my perspective after near on two years on Macitentan here is my experience. Firstly I was not on any other drug when given macitentan so the improvement was pretty dramatic albeit it was a steady improvement over three months. Prior to the drug on a two kilometre walk with slight rises I had to stop three or four times gasping . Now I can do the same walk briskly ,no stops. My only side effects are 1. Nasal congestion especially when lying down or sleeping and sneezing . Now my caveat here is I have in the past been accused of being able to smoke under the shower and have had around 8 broken noses. My only other issue is the inside left of my ankle is now permanently slightly swollen .Could be the macitentan don’t know. Thats it.
As far as being able to run up stairs and lift weights I guess it depends person to person so I would ask a few questions before committing. Good luck.-
Hehe, @terry, thanks for sharing your perspective with Cody. Your comments on running up stairs and lifting weights make me laugh this Monday morning. I did good to get out of bed, get dressed, and take Sasha on a short walk thus far. Some would say that’s a lot, but I always think I can and should be doing more. I’m thankful for my hubby, Manny, who reminds me that I need to rest. Do you find your wife does the same?
I did experience some swelling when on Opsumuit, mainly to my ankles and lower legs. But then again, I was on other PH treatments while on it, too.
I hope that you and your lovely wife are doing well.
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@jenc Thank you for linking the past post that helped me a lot. We are just starting down the path so I am not sure the financial part of it yet but the more informed the better. @colleensteele Thank you for response and helpful information as well. I am overall doing well and could definitely be in a worse situation. I tell my friends and family it’s just part of the process, we just keep kicking the can down the road until there is a cure found. @terry I appreciate your words of personal experience with the medicine, I am glad you have had good results. I remember when I first got diagnosed with PAH and getting my first treatment, I felt so much relief. Thank everyone!
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Hi Cody, I’ve been on Opsumit for 11 years. It has been very helpful and has improved my quality of life. It’s expensive but it works. I still get short of breath climbing stairs but I can climb the stairs which was an improvement. I haven’t had any side effects. Best wishes Gayle
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Hi @gward, it’s great to “see” you again. I’m happy to hear about your experience with Opsumit. Isn’t it interesting how we see some improvements when we find the best treatment for our bodies? Each treatment is unique, and we all react differently, making things difficult. But, it’s fantastic to connect with others here by sharing our experiences and offering hope as you do here for @codydaman. Thanks, Gayle, and I hope that you’re having a feel-good week- hugs from San Diego.
How are things going this week for you, @codydaman?
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