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    • #22623
      Shannon
      Participant

      Hello. I hope everyone is well. I recently started Uptravi and I am having side effects. My shoulders ache, my head hurts, and I can’t sleep at night. I am not sure if not sleeping at night is a side effect or it’s just me. But it seems to be worse. I was hoping I would feel some improvement with this medicine but nothing has changed for the better. My next step if this medicine fails is the pump with Flolan. And I don’t want to do that. My question is what side effects do you have with Uptravi? And how long before you noticed the medicine helping you to breath better? Or how does it help you? Thank you so much! Any help is appreciated. Take care

      • This topic was modified 5 months, 2 weeks ago by Shannon. Reason: Spelled Uptravi wrong
    • #22626
      Colleen Steele
      Keymaster

      @shannon4jk this response is from Kevin @ksmith610. He’s having trouble posting (looking into it for him)…

      I take it and have since March of 2019. It is keeping me alive and allowing me to breathe decently and while I can’t shovel snow anymore or carry heavy stuff or do more than a flight at a time, I am fortunate. I should say here that I’m not sure if you take other meds besides Selexipag (”Uptravi” I just don’t like the sound of that name) that probably will make a difference, but not always a good difference. Case in point: excess vasodilation. I was taking Tadalafil (”Adcirca,” ”Cialis”) for several months on its own before the Selexipag. Once I began Selexipag I took them both together. As I increased the dose of Selexipag, I would be laid low by headaches. The worst I’ve had, and I tend not to get headaches or much of any complaint except for PH! I noticed they got worse as I increased the Selexipag. So I experimented and began taking Tadalafil about 4-6 hours AFTER the Am dose of Selexipag and it worked. No more headaches. Oh, and THC in mild doses (Vermont allows medicinal MJ) helped, too. My current pulmonologist at the University of Rochester feels that because my PH was caught ”early” – relatively speaking; I was diagnosed in 2018 and the symptoms, in retrospect, misdiagnosed as COPD, began in 2013 – the 1200 mcg dose I wound up on with Selexipag might have been too much, so I went to 1000 mcg, keeping the same Tadalafil dose (40 mg once a day), and keeping them separated. That might be a key – MIGHT – as you can only determine that in consultation with YOUR pulmonologist and your own physical feelings. Timing. Also interactions with other drugs. Drugbank.ca is a wonderful site for testing interactions and learning a lot (really, too much) about any drug marketed. I tested all my meds against Selexipag. Little really significant came up because it is a new drug and has such a specific focus it tends to play nicely with itself but not pay attention to others, to a degree, but of course one can’t say that about every drug! (For example, though, this website revealed that CBD shouldn’t be taken with Selexipag because it reduces Selexipag’s vasodilatory effects. Counterproductive and definitely not desirable.) When I began the Selexipag I was also taking Diovan for BP, also a vasodilator. I was taking other things for other conditions but ultimately it seemed I was taking too many vasodilators and was getting vasodilation headaches. Yes, Selexipag also did other things (SEs). The first bite of food after the AM dose means I have to grit myself for a flash of tempomandibular joint pain. It can be pretty interesting. So I am now aware of the ”first bite” and do a first chew very slowly, knowing no matter now slow or easy I chew I’m going to get the blast. That’s Selexipag life. Curiously, I also developed, in the last 6 or so months, supraventricular tachycardia as well as premature atrial contractions. Cause and triggers unknown, as is usually the case. While unnerving, I am told they are not ”life-threatening.” However both cardiologist and pulmonologist acknowledge the recurrent (although not non-stop) funky beating of the heart can’t be ”good” for it. I am badgering them for medicinal answers, trying different drugs, and, ultimately failing that, I will pursue cardio ablation (an electrical or cryogenic ”zap” to the tiny point in the heart sending the wrong electrical impulses causing the SVT/PAC). Whether that is connected to PH or to any of my other meds is difficult to say as, obviously, more research would be needed about a rare concurrence happening in an extremely small affected population, so I’m not holding my breath (strangely that’s one of the Vagus nerve stimulation techniques for trying to mitigate SVT). I relate all this because from a high-level look everything may be related to each other and to the PH of course. I encourage you to do online research … lots of it … and bother your pulmonologist with questions. Most major care centers have special email systems with which you can communicate. The VA has one and I am somewhat known at my local VAMC and local clinics for being a ”power user” which for some is a euphemism for a pain in the posterior, but my cardiologist doesn’t think so since he was just a cardiologist who had to learn quickly about PH since my local VA medical center had no PH-knowledgable pulmonologists, and the nearest one who did was in Providence, RI, some 4-5 hours away by car (we are soon moving to Rochester, NY, to be closer to the U of R’s medical center, acknowledging this is probably my last move, back to the city in which I was born almost 60 years ago to see what we can do to make the remaining time with PH comfortable and hold it at bay for as long as possible). I hope I haven’t bored you but I sensed in your post natural desperation and despair, and I have been there, am there and will continue to be there. Oh, one more thing: while pulmonologists tend to adhere to an up-titration schedule for Selexipag, I would ask your pulmonologist if he/she would support a longer in-between doses period giving your body more time to adjust to each increase. Please do not take that as ”medical advice.” It is simply a suggestion to DISCUSS wth your MD. I did, and I took longer between the higher doses and it alleviated some of the stress to the body. Yasher koach (means ”from strength to strength” in Hebrew, and my wish for you, plus Shalom)

    • #22637
      Joyce Sandberg
      Participant

      I went for special blood work yesterday and the results will conclude if the Uptravi is lessening the pressures to my right heart. Those were the reasons given me for the addition of Uptravi along with the Adempas meds and Eliquis I presently take. I will see my pulmonologist who handles both cardiac and pulmonary needs next week. The Uptravi meds gave me headaches and diahhrea and has subsided as I am now taking 800 am and pm and will once again try to titrate to 1000 am and pm. I will wait until I see my pulmo next week before increasing the dose. It seems prudent to wait as I have to travel 2 hours each way to Cleveland Clinic in Weston. We usually stay overnite in Fort Lauderdale and combine it with dental visits as we previously lived in that area for 30 years. I don’t want any unexpected bouts with bathrooms.
      The Adempas alone was not lessening the pressure. Hopefully, I will have better results with the addition of Uptravi.

      • #22681
        Shannon
        Participant

        Joyce thank you for responding. I didn’t realize they could tell pressure rates through special blood work? If so does that replace a heart catheter? I learn new information everyday about PH. It’s a lot more to it then I ever thought. It’s overwhelming at times. I am sorry to hear that you have diarrhea as a side effect. That’s a very uncomfortable thing to deal with and traveling must be very difficult for you? When I travel I always get a upset stomach and diarrhea. What to you do to stay well hydrated? I wish you good news at your upcoming doctors appointment and I hope your stomach gets to feeling better.

    • #22638
      Shannon
      Participant

      Good morning Kevin and thank you so much for all the information. I found it to be very useful and reread it a few times. I am glad that the medicine is helping you and you seem to be doing well on it? That gives me some hope. I don’t look forward to jaw pain. That sounds like a common side effect for a lot of people. I also found the drug interaction website helpful. I did double check my current meds with Uptravi, I didn’t notice anything significant. I also asked my doctor to give me another week or two before going up to the next dose. I just can’t handle the shoulder pain. It’s like a crushing , sharp almost makes me walk bent over pain. It’s very weird. Lol I appreciate your time in responding back to me and all of your help. I wish you luck on your move. That sounds exciting! And I am sure it will be nice to live close to all of your doctors. I am going to keep taking my medicine and hopefully I notice some important soon. Or else I might just throw everything in the trash and call it a day! My email address is [email protected] if you think of anything else that might be helpful for me . My Pulmonologist is ok but I go to a clinic and normally get bare minimum help. It’s a busy place with a lot of elderly people. You have given me more information then my doctor. Thank you!

    • #22644
      Brittany Foster
      Keymaster

      @shannon4jk Best of luck to you with that medication. I hope you get the adjustment that you need. It can get really hard when we are adjusting to medications especially when they have the side effects that can be uncomfortable. I know that for me personally I have to combat a lot of medications with OTHER medications to help. Have you been given anything to help with the discomfort that you’re feeling at least during the adjustment period?

    • #22660
      Jen Cueva
      Moderator

      Hi Shannon, I have been on Upravi since just after it was FDA approved. I agree with you to let your doctor know to wait before you increase the dosage. I know that with me, a few times during increases, I had to wait an extra week. My PH doctor had warned me that I may need to do that. Your body needs time to adjust. Some need more time than others.

      Also, try taking it with food and separate from other medications. I also know that everyone may require different dosages, I am on the max of 1600mcg twice per day. I did have to cut back a few times then went back up. It is not uncommon. I did have one PHriend who could not take it, but I know many who have been doing well on it.

      I, like you, was facing IV Flolan before this was approved, so happy that it was released. I pray it works for you and without too many side effects. The worst for me has been leg pains and body aches like the flu. I take medications routinely for my leg pains. Hot baths help me some, too.

    • #22671
      Brittany Foster
      Keymaster

      @jenc and @shannon4jk for the first time I actually have been having really awful leg pain. After writing about it on my instagram and sharing what happened with me and the pain I felt in my legs due to my oxygen levels being so low with activity, others were reaching out to me saying that they experience something similar. It helped me feel less alone in all of this. Jen, it is good that you had someone to talk to when you were going through the adjustment period. Side effects and symptoms sometimes just make me really anxious and nervous especially when I don’t know the reasons behind it. When I know WHY it’s happening I can deal with it more.

    • #22682
      Shannon
      Participant

      Good morning Brittany. Sorry to hear about your achy legs. Keep a eye on it. When my legs start to really ache and I have stabbing pains it’s normally right before I pass out. That’s the first warning that I get. So I normally sit right away or I have learned to fall side ways so I land on my side. I am sure your legs are just fine but I thought I would tell you what I experience with achy legs. And yes starting new medicine with all the side effects freaks me out. I am just hoping to be able to get out of bed soon and move around . My PH is rapidly progressing and nothing seems to help. I feel like I am drowning but I am not in any water. If that makes any sense. Take care. And as always thank you for responding back to me.

    • #22683
      Shannon
      Participant

      Hi Jen! I hope all is well with you. Thanks for responding. So you take Uptravi and your on the Flolan pump are the same time? That must be a lot? How long were you taking Uptravi before you noticed any improvement in your breathing? That was good advice in saying take Uptravi at a different time the rest of my meds. I was taking all with my morning shake. Now today I have spaced them apart. I hope that helps. I am praying this medicine works. I had to fight like a pit bull just to get it from insurance and the manufacturer. And now my PH is progressing so I am bed bound. On any movement even with oxygen my pulse ox drops into the 60s. Not good and nothing seems to help. I am comfortable in bed but it’s getting old really fast. Take care and I hope your doing good.

    • #22685
      Brittany Foster
      Keymaster

      @shannon4jk I totally understand the feeling of being like you are drowning without being in any water. Sometimes that is how it feels when I try to take breaths in, especially after working out. And oddly enough, this DID happen to me and my legs hurt like this and I became really dizzy and on the verge of collapsing. This is what sent me to the hospital and the ER to get checked out, not just because of the sore legs. I was glad that they found the answer to what was going on so I could know to adjust the oxygen use. But it is hard when going up on oxygen because sometimes it serves as a reminder of what we just CAN’T do.

    • #22735
      Ally
      Participant

      Well I have been on Uptravi since September 2019 and have titrated to 1000 mcgstwice daily. I had horrible side effects I had all of them nausea, vomiting, diarrhea, muscle pain, jaw pain, headache, rash, insomnia, and my liver enzymes elevated for the first time since I was diagnosed. I have decided with my doctor that 1000 mcgs twice daily is good for me because all the side effects have subsided except diarrhea and an occasional headache. I was also facing IV Flolan or lung transplant. It has improved my breathing but not a lot yet. When my insurance left me without it for 3 days I NOTICED!! Believe that I realized just how much so yes there is a light at the end of the tunnel 😊

    • #22737
      Shannon
      Participant

      Hi Ally. I am glad to hear it seems to be helping with your breathing. How did you handle the headaches? They are horrible! And I never get headaches so I don’t even know how to handle them. Besides Excedrain. I have gone back down to 400 mcg twice daily and still having headaches. So I am hoping they lessen or go away completely soon! I don’t notice any difference in my breathing, except maybe the first 2 to 3 hours after I take a dose I do seem to be able to walk around a little easier. I am going to give it more time( if I can handle the head pain) and see if it helps me. Thanks for your input! I appreciate it.

    • #22760
      Ally
      Participant

      I never had headaches either but they subsided for the most part now. I went to my doctor today and my O2 is up to 99% so he scheduled a heart cath to check the pressures in my lungs. They have to be way down with my O2 at 99%.

    • #22768
      Brittany Foster
      Keymaster

      @ally1567 I feel like sometimes I get so used to something working for me that it can feel like it’s not working at all. Then when I stop it I’m like “woah wait a second, I actually probably needed that!” It is like a giant mind game to start getting used to a medications because sometime we fail to notice the benefits that they have until we don’t have them anymore for whatever reason. I hope that they are going to find a combo of therapies that helps and limits side effects as much as possible. It is hard!

    • #22771
      Brittany Foster
      Keymaster

      @shannon4jk one of the “cocktails” in the hositals for migraine and headache relief is actually a combination of Reglan and toradol (like an ibuprofen). Are you on Reglan or have you ever taken it before? It is used as an anti-nausea meds but has other benefits such as GI benefits for people with slow motility as well as helping with headaches. For me if always makes me very shaky and like I have ants crawling in my body because I think it must have a similar effect as caffeine does on my body.

    • #22780
      Ally
      Participant

      I take macitentan Opsumit and selexipag Uptravi. The headaches don’t really bother me anymore. I am still more short of breath than I want to be but just the doctor saying it’s working helps a lot.

    • #22781
      Ally
      Participant

      I just kinda suffered through the side effects because I feel like I am on so many medications that I don’t want to add anymore.

    • #22782
      Ally
      Participant

      Thanks Brittany and my echo is Thursday afternoon and I go to my doctor in 2 weeks to discuss the results. I will let you know.

    • #22789
      Ally
      Participant

      Thanks Brittany I will keep everyone posted and thanks for all your support!

    • #22792
      Colleen Steele
      Keymaster

      Please, do keep us posted Ally. I will be thinking of you and hope all goes well on Thursday.

    • #22801
      Joyce Sandberg
      Participant

      Ally:
      Good to hear you were able to titrate to the max on Uptravi. I keep on trying to go to 1000 but have horrible diahrea (uncontrollable). Saw my Dr. yesterday and he said to try 800 am and 1000 pm for several days before going to 1000 twice a day. Also said to eat a small meal before and take Immodium AD as needed. As for blood work resulted in an improvement in my heart less stretched than last year with a small overall improvement in my PH CTEPH.
      He said that Uptravi will yield better results at 1000 or more rather than the 800. But to balance the quality of life with doses tolerance.
      My sleep is definitely affected. I get into bed and get 3 hours before my hip joints pain awaken me. Then to the bathroom and back to my recliner for grabbing an additional 3 hours or more of sleep.
      Nausea and some headaches through titration until my body gets used to the new dose.
      I will keep on truckin with Adempas, Uptravi, Eliquis, Pepcid, and Incruse Elipta inhaler and Ventolin if needed.
      Separating my meds as needed.

    • #22804
      Ally
      Participant

      Don’t give up Joyce if your numbers are better because I almost did at 800 because it took me 4 weeks to get to 1000 but for me that’s the magic number! Still have diarrhea that’s never went away but the other side effects have and my O2 was 99% yesterday so stay with it if you can! Good luck

    • #22805
      Ally
      Participant

      Thanks Colleen I will but it got rescheduled for Friday

    • #22985
      Martina
      Participant

      Please, I am now on 400 mcg of Uptravi, twice a day. Is it enough? Should I take higher dosage? What horrible side effects would I have to survive? Thank you!

    • #22987
      Brittany Foster
      Keymaster

      Martina,

      We are not health professionals here , we can simply speak from our own experience so I would refer to your doctor about side effects and changing the dosage of any medication. never change a medication or dosage without your doctor permission because this could lead to dangerous consequences. Please ask your doctor.

    • #24663
      Joyce Sandberg
      Participant

      I have been on the max dose (1600 2 xs) now for 3 weeks. Hopefully it will help. I noticed an increase in oxygen sats on my oxymeter my oxygen setting is at 3 ltrs. I am on oxygen 24/7. 4 ltrs for sleeping. Aching muscles persist, but I deal with it. 2 – 3 hours of sleep in bed another 3 on my recliner. The other side effects (headache, diahhrea,) have gone away. Occasionally I take Immodium AD if needed. The other Tylenol 8 hrs for muscle aches; I don’t know if it really helps me.
      The Adempas 2.5, Uptravi 1600 Eliquis 5mg and Incruse Inhaler are my dosages.

    • #24665
      Brittany Foster
      Keymaster

      @joyce-sandberg it seems like you are balancing a lot of medications and management of treatment. How do you keep track of all of this that you’re taking and how do you monitor side effects? I know this part of chronic illness can be a challenge.

    • #24679
      Jen Cueva
      Moderator

      Hi @joyce-sandberg, it sounds like you have your routine down. I am also on the 1600 mcg twice per day. I am doing pretty well with mine, too. I am happy that it sounds like you see some improvements already. I hope that you continue to see improvements over time.

      You mention that you are also on Adempas. Do you have CTEPH related to blood clots?

      AS Brittany mentions, this is a delicate balance trying to manage symptoms and side effects. I did not see a lot of diarrhea with Uptravi. But I was on previously on Oreintram, and that was a horrific side effect for me with that. Our bodies react differently to all of the medications.

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