Does Uptravi (selexipag) Make You Sleepy?

[Janet Blumenshine]

No, I don’t think so. I am on 1600 mcg 2x a day. Of course, one is always tired and, I guess, sleepy sometimes. So, that’s when I take a nap! But, don’t really know what causes all these symptoms…meds, age, scleroderma, GI issues, dry eyes, etc. Just look forward to the next day and hope things will get a little better. I have never felt that I had side effects from each med…cellcept, Uptravi, nifedipine, Opsumit, Ravatio, Dexilant and a few others. Also, oxygen when needed. Always hoping for that special answer to it all. But, I am thankful that I am still able to do most everything I want to do…just not like I use too!

[Joyce Sandberg]

Jen,  I too get sleepy during the day; not from the Uptravi rather from the four hours sleep I get with additional hours as the day progresses.

The most sleep I get is 6 hours at a time.  Muscle, leg discomfort awakens me and off I go to the recliner and try to get another hour or two.

I am max dose of Uptravi along with max dose of Adempas.  Side effects are diareah, leg discomfort.

[jen-cueva]

Hi @jblum, thanks for sharing your experience with Uptravi. I am on that same dosage. Like you, I do feel tired and fatigue, but I never thought of being sleepy as a side effect. But, I am guessing it is a combo of meds, PH, and other coexisting illnesses like you mention.

That is a big handful of meds, so not having side effects is positive. I love your optimism.

I think we all want that “special” answer or solution, right? But living each day one day at a time and being grateful is essential to get through us through the days.

[Janet Blumenshine]

Has anyone been on the max dose of your PH meds and they stopped working as they should? I asked my doctor this question, and he said the meds don’t stop working but that your disease just is progressing. I know I shouldn’t “borrow from tomorrow” but was wondering if anyone has been there and what was the next step. All my meds are by mouth except my oxygen. Thanks all for caring.

[jen-cueva]

Hi @jblum, I have experienced this many times throughout the last 15 years that I have had PH. My previous PH doctor, who I had for about 10 years, would say one of two reasons this was happening. The first was that our bodies if taking the med for a while, stops responding in some ways. This can happen. The other reason is the progression of your PH, as your doctor says.

Do you feel like your symptoms are worsening? Do you think that you notice things that tell you your PH is progressing? Are you SOB, or what makes you think your meds are not working? Was this based on some tests that your doctor did?

Often, the reason is that they just have not yet found the best combination of meds for you. Whatever the reasons, I am sorry to hear about your meds, not working.

[Janet Blumenshine]

Jen, no I don’t really feel that my symptoms are getting worse. It’s just that I’ve been on the max drugs for about two years and, of course, was concerned how long this will last. Yes, I feel they are working. I do have another appointment in Sept. when they do some more testing to check the progress. I’ve had PAH for about 7 years and was told at that time that the max years my doctor had a patient live was 8 years. I know, I shouldn’t worry about tomorrow and just enjoy each day, which I really do do. Thanks for your help! Also, they have come up with some newer drugs since then and everyone is different.

[Cathy Brown]

I was googling “does uptravi make you tired” and it brought me here to my Ph phriends. Yes, it makes me feel overwhelmingly tired sometimes, especially when I increase my daytime dose as I did today. I just want to nap, but that’s hard when I’m working. I just found out in my google search that this is a side effect for about 1 in 10 people. I’ve been struggling with work. I’m a marketing writer and work from home, so I don’t have to be on my feet or anything like that. But my brain is just like sludge sometimes and it’s hard to feel like I’m doing a good job.

[jen-cueva]

Hi @catbrown, I am also on Uptravi, the max dose of 1600mcg twice per day. As I mentioned above, I feel fatigued and have brain fog but never contributed to the Uptravi. I blame PH and my other health issues.

But, I do get tired, and often by 3 PM, I am useless. Some days, it is earlier. What dosage are you on now? Are you still titrating?

Writing while having these issues is challenging. I can relate. I have to work when I feel mu bed, but I only work a few hours per week.

Are you full-time at your marketing job?

Thanks for sharing your experience.

[Cathy Brown]

I think I read on the product website that 1 in 10 people felt tired taking it, so not as common as some of the other side effects which were listed in a “more than 1 in 10” category. Sometimes it’s good to know that you’re not just imagining a side effect, so I’m glad I read up on it.

[Cathy Brown]

Thanks for responding. I am still titrating. I’m at 1400 at night and 1200 in the morning. I tried to increase the morning dose this weekend but backed down because I am single parenting right now and didn’t feel like I would be safe to drive my 12-year-old to activities or drive to the store. I am working full time still, although I’m in the process of getting approval for “intermittent leave,” which would let me take an extra 30 days a year off beyond our regular sick leave allowance. I am grateful that I’m still able to work full time because the pay and benefits at my job are great, but it is tough to get through the day sometimes.

[jen-cueva]

Hi @catbrown, I agree with educating ourselves about our medications. Having this knowledge helps us know if this is common; we can report to our medical team.

Knowing that we can share our experience allows us to validate our symptoms help others who may not have contributed certain side effects to specific meds.

Yes, I think that you made the best decision by holding off on your titration right now. Being a single parent and uncertain if you can drive would be difficult. This is an important reminder. I wait to see how new medicine or an increase affects me before I try and drive. I only drive short distances anyway, but being precautious is critical.

I hope that you can get that approval for intermittent leave. My husband has it because of my health issues. When I need to be at the medical center or hospitalized, he doesn’t like leaving me.

Hang in there; I know that working full time while trying to titrate and single parent must be exhausting.

Is single parenting for weeks or months? Does your husband work out of town?

Take time for yourself too and listen to your body, my PHriend. Please do let us know how we can best support you.

[Cathy Brown]

Thanks for your support! My husband just got a new job in Arizona, and he had to start Sept. 20. My son and I will move out over Christmas. It’s been kind of good having to handle things on my own. It makes me feel more confident. I’m actually able to handle quite a bit as long as I have the oxygen. My sister is coming for a few days next week, so that will be nice.

[Colleen]

@catbrown I’m so happy to hear how being on your own for a while has built your self-confidence. Are you busy packing and that sort of thing? How do you feel about moving?

Enjoy your visit with your sister! That sounds lovely and I hope you make time for some relaxation while she is there.

[Cathy Brown]

Packing, Colleen? You’re funny! I’m barely keeping up with the dishes, LOL! Never mind the dog fur. I’m hoping to do a tiny bit of packing next week though when I take some time off work to hang out with my sister. I’m ok with the move. We’ve lived in Phoenix before. It’s hot, but I won’t have to drive so far to the PH doctor.

[jen-cueva]

Always, @catbrown, we are here to support you through this journey. Christmas break will be here before we know it.

It’s funny that mention, it sort of boosting your confidence. My hubby hates to leave me alone. But I finally convinced him to see our kiddos one weekend. I was so proud of myself for doing whatever I needed while he was gone.

Of course, I have neighbors and friends to help, too. Having your sister come out a few days will help you a bit more, too. Please don’t overdo it and take care of yourself.

How is your tween song feeling about relocating? Is he excited? I know that you all will be happy to be back together again soon.

[Sally Hoffman]

Hi,   I have been on Uptravi since a year ago last June.  I take 1400 2x per day.  Truthfully, the tritatrion was awful, especially near the end.  I got to 1600 and had to go back, to 1400.  However, once things settled, it has been fine.  I was never sleepy, as in drowsy, but the fatigue still happens after about 3 or 4 o’clock.  When it happens, it is like being a four year old rag doll.  But I, too, believe it is from the disease, not the Uptravi.  The Uptravi side effects were headaches, jaw pain, and the last week of titration it was leg pains.  I remember when it was the worst I spoke to the Accredo pharmacist who said  “Are you tough?  See if you can go three more days and it will be over.”  He was right!  I wish everybody could have this drug.

For the person whose doctor said the longest he had a patient was 8 years.  In the very beginning my Pulmonologist said 10 – 15 years.  During our last visit he said “I no longer consider you to be a terminal patient”  For you, this is just a chronic condition!  We will stay on top of it.

Best of luck to you all.

[Cathy Brown]

So good to hear about your good results, Sally!

[jen-cueva]

Hi @mainegal, I, too, tend to get exhausted about 3-4. I, too, contributed it to PH.

I am 16 years since diagnosis, @catbrown. February will be 17 years. So, hold on to hope, certainly.

As Sally reports, the titration period is the worst. Also, some never get to the 1600mcg twice per day. That is whatever works for their body.

I know a few PHriends stopped at 1200-1400 mcg and have been there for years.

Yes, Phoenix is hot, but a dry heat. I would swell so much when we were in that area visiting.

IT is a plus that your PH center will be closer. I had to laugh at your response to Colleen. I certainly can understand that with all on your plate.

Enjoy your sister’s visit. I know you are looking forward to that.

[John Caraway]

I take 1600mcg 2 x a day and I haven’t noticed any med related drowsiness. Mild headache, jaw pain etc but that’s even tapered down. I’ve started forcing myself to go to the gym 3 x a week and ride the bike 3 miles on #12 grade now and im noticing a marked improvement.  I have to use supplement oxygen when I work out but I recover way quick now and my 6 minute walk of doom ???? is alot better. I’m a 3 year widower now and I’m so sick of sitting being sick. Time to enjoy life again.

[jen-cueva]

Hi @jecaraway62,
I am happy to hear that you have started at the gym. It sounds like Uptravi is working well for you. Noticing these improvements feel great.

Did this exercise start after the Uptravi or before? How long have you been on it?

You are doing fantastic and inspire me as I plan to start walking and doing more activity here soon. After my horrible case with COVID last year, I am hopefully coming off full-time oxygen before the end of the year.

Once that happens, I will try a bit more activity.

I am sorry that you are a widower. It sounds like you are now doing things that will improve your quality of life. That is what life is about; life’s too short.

Keep it up, and let us know how you are going every so often.

[John Caraway]

I started about the same time, last February so 8 mos now. At first it was 3 days a week at pulmonary Rehab which help get me started. I was at about 330lbs.  Rehab stopped in July and I’ll admit it’s harder to motivate on my own but I’m trying. My weight is now 295lbs leaving about 30lbs to go, I’m a big tall person so 260lbs is my norm. It’s not easy and I can find a lot of “excuses ” to wiggle out so I have to stay diligent ???? mostly…. I am a PPAH patient with no other disease.  At diagnosis in 2012 I was turning blue, fainting etc. It was bad. I’m thankful for everyday now. Hope you heal from covid soon, even short walks holding a shopping cart are really good for you. ????????????

[jen-cueva]

Thank you @jecaraway62, I do have several goals to work on before the first of the year.

I am doing great as far as recovery, but it’s been a long road. Some days are better than others, of course.

You are doing such a fantastic job! Motivation can be difficult, especially after the break-in of your routine. It sounds like you are staying diligent and keeping the pace moving forward.

Do you have any workout friends yet? Maybe a gym partner, someone who can help make you accountable?

Congrats on your weight loss; that’s not easy to do with PH.

You mention short walks holding on to the shopping cart. I am starting with walking our mini schnauzer on brief walks. We have not been far at all. But just our driveway to the mailbox and back is a start for now.

Thanks again for sharing and helping to inspire and motivate me.