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Uptravi, reactions during titration, side effects
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Hi @amit-ramsinghani, I wanted to tag you here to see others’ experiences with Uptravi (selexipag). Hopefully, by reading about others’ experiences with this medication, you will find support for your mother’s PH.
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Hey, y’all, @mainegal shared in another post that she experienced unexpected weight loss as a side effect from Uptravi. She was so frail and didn’t want to eat. Of course, she also struggled with the diarrhea that it often causes.
But thankfully, her PCP ordered some not-so-common bloodwork, and she found out she had no digestive enzymes. Has anyone else experienced digestive enzymes disorders while on Uptravi?
Sally started taking CREON; she has regained her weight and feels better. Has anyone else used this medication to help with digestion? Please share your experiences with Sally and the rest of us.
Thanks again, Sally, for sharing this in another discussion about unexpected weight loss. I’ll share that link below, too.
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We all talk about the side effects of Uptravi. I certainly do, but I want to put in a word here about how much better I am because of it. While titration was a nightmare, a nurse came to my house all throughout. She never let me move up unless the effects were gone for at least a week. We took several months to get to max. By coincidence, around the 800 point I had an echo which showed my pulmonary pressures had gone down over 20 pts. When I think about what I felt like before Uptravi and how I feel now. I know all the side effects either during titration or ongoing are well worth it! My pressures are down 33 pts.
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Kevin,
I’m just finishing my second week on the full Uptravi/selexipag dose. My system is still adjusting. I expect full adjustment to take awhile.
My most difficult reactions were flushing, muscle and joint pain, and (mostly morning) headaches. I had mild nausea, mostly just gassy, and a few episodes of diarrhea. The jaw thing too and increased congestion. Reactions were spread out, at different times, often on different days. Some lasted longer and were more difficult than others, none intolerable. A lot of variation is possible.
What helps: eat first, take something for pain and/or digestive tract issues about 1/2 hour before taking selexipag. I keep Tums handy. Moving around helps with moderate muscle and pain. Sometimes you can sleep through worse ones.
Wish I’d known about weed; sheesh, I’m in Colorado.
Any time our reactions feel like too much, take a half step on the titration or stay an extra week on a level before upping your dosage.
This is off the top of my head. I’ll write more later. Keep us posted. More questions, just ask.
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Kevin, I’ve been thinking about your nose on selexipag. How is it doing. I know what you mean about ambrisentan and congestion because I’m on it too. I suspected a large part of my congestion problem with selexipag was the combination with ambrisentan — plus other side effects magnified by other meds.
Other than a bad day this week that overdoing and bad air quality might have had something to do with, my system continues to adjust — including less congestion. That much and using a CPAP have made sleeping through the night difficult, uninterrupted sleep rare until the past two nights.
Reactions seem to vary widely but mine didn’t really hit hard until the second week. I started feeling benefits before the reactions hit. Then, except for occasional days, they outweighed the benefits. All weeks there were good days.
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Hey Vanessa,
I’m so glad that you are noticing some good days within your weeks and I’m sure that makes it easier to manage with knowing that there are better days ahead and something to look forward to once the side effects start to get less severe. The congestion must be awful. Are you able to get better sleep now? It does take awhile to get used to the mask and get used to waking up and falling asleep with something on your face, but you WILL get used to that to, it just takes time, like everything else. I wish things could be more instantaneous for us, but unfortunately, even with me lately it always seems like I am in some type of “waiting period” and waiting for the next thing. -
Hi kevin,
I totally get the frustration of the side effects. Nobody wants a splitting headache and nausea. Luckily those symptoms are supposed to be ones that resolve as your body adjust to the medication. I have never been on this particular medication so hopefully members that have will be able to chime in. But I would definitely be vocal about the symptoms that you are experiencing and since they should be “temporary” maybe the doctors that you have can prescribe you some medication for migraines or for the nausea that works (seems like they are giving you the zofran and I’m wondering if that’s helping). Glad that you are seeing some improvements with the breathing though and are noticing differences in your sleep at night ! That’s HUGE !!! Try not to get too frustrated with the bad side effects and overlook the things that the medications are actually doing for you. Be sure to write down BOTH the positive and the negative and see if your doctors can work with you on the negative stuff! YOU GOT THIS! -
Kevin, this will be a short because I’m heading out for a walk — determined to make the most of good weather and finally being able to go more without the effort knocking me out for the rest of the week. I’ll write again when I get back,
Hang in there. Like Brittany says, you are not alone here.
My third and fourth weeks were the worst — my system adjusting to selixipag wore me out so much it was impossible see improvement. The side effects were because the med was doing what it’s supposed to — increase circulation. I was exhausted, aching from my head to my feet, and slept a lot.
But definitely check that out and get blood work done for polycythemia. fwiw other high RBC conditions show up in PH research case studies.
Vanessa
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Thanks for sharing all of that with us Kevin and Vanessa, thank you for the words of encouragement because I know that you recently wen through the titration process and would be a good person to reach out to for this because of your positive words!
The best place I go when I’m wondering about side effects is the pharmacist. They will be able to take a look at all your medications. I would bring your list to the pharmacy if you can and speak directly with them. They may need to look things over and you may need to go back that day or just get a phonecall back from them once they have had the chance to see about interactions with the medications. I would specifically look at the interaction between the two medications that seemed to cause your headaches ! The pharacists know best when it comes to this stuff! -
Kevin,
I just direct messaged you because I am thinking about you and thinking about your health and mental health right now. Please know that this is a community of support and that we are all here for you. I know how t feels when it seems like everything is too much and just beyond your control and how overwhelming and isolating that can feel. I can relate and want you to know you can reach out to me any time you need to. I hope you can find some type of hope to hang onto and even just some type of hope knowing that there is a whole community of us who is here to support you and who care about you. -
We are always here for that support for you Kevin. I would definitely bring this up to the doctors about how the medications are making you feel and not just try to “tough it out” and push through it. You know your body best. That’s the one thing that we do have control over is speaking up and letting them know when something is wrong! YOU GOT THIS!
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@ksmith610, I asked about the VA because that is how you get your Selixipag. The VA has its own distribution system and purchases pharmaceuticals directly. Actilion distributes through Accredo, which has a PH Desk and a competent intake/follow up procedure for Uptravi/Selixipag titration. Licensed nurses, experienced with PH and often certified in the specialty, staff the desk. A nurse called me every week during titration, and the support line is available 24/7.
I wish you had that support, but if VA does not have anything comparable anywhere in its Byzantine bureaucracy (my son has been on VA disability for 30+ years), then maybe Actelion does. Call the Tufts PH Center too. The PH team might (imo should) have a direct number you can call so you don’t have to go through the switchboard.
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Kevin, my son can sympathize with the vasodilation headaches. He was on Flolan and always had to titrate very slowly or else he would be down for days with a migraine. It’s that way for him with several other things too. He is post transplant now and occasionally has to have IVIG infusions. They have to go so slow on him that it takes 15 hours so he always has to be admitted. His doctor would often say in regard to his sensitivity to treatments and medications, “The good news is he is extremely responsive and the bad news is, he is extremely responsive.”
I’m glad you figured out a way to avoid the headaches but continue treatment.
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Kevin, that’s a great tip. I know with some of my medications, I spread them out, too. I usually wait at least an hour, if possible. When I took a once a day medication, my doctor suggested I take it at bedtime to help alleviate some side effects.
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I can sympathize with BOTH of you !! The vasodilation headaches are absolutely horrific. I remember taking medications that also worked on the blood vessels. I was on one awhile ago, I think it was called midodrine to help keep the vessels open with fluid and less floppy. But It caused terrible headaches and my blood pressure plummeted on it. I could feel pulsing in my ears and just had to stop. I was on such a small dose too. Like your son, I am super sensitive to anything that has to do with the vascular system or any medication that has an effect on the nervous system (which unfortunately most do!)
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Kevin, being that sensitive is a mixed bag. Side effects tend to be worse but, as my son’s doctor explained, it also can mean that your body really reacts well to the treatments. Some people can take medications and it have not effect on them at all. Being highly sensitive just meant you have to a slow approach to treatment and eventually you will get to the desired dose. It’s a painful challenge though and I feel for you.
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Kevin,
I understand how frustrating it can be. Some of my doctors will say “it’s just a baby dose of the medication” but for me, it could set off my entire system. Even the BABY doses I sometimes need to cut in half or cut into quarters depending on how my body reacts to it. Some people can pass through titrations of medications with flying colors, I am definitely the exact opposite and find the physical toll really challenging. What is the hardest part about the symptoms for you, Kevin? -
Those ” baby doses” are often what I get m too. I am in a ” baby dose” of Ativan and too often the doctors want to increase it. I’m good at my dosage.
@ksmith610, that jaw pain is actually a well known and experienced side effect from many of the PH meds. It’s often the first bite or two of food and is over quickly. It is definitely easy to know when you have it. I still experience it at times but I notice if I eat with my medications it’s not as bad. It was worse titrating up.
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Best of luck with the pulmonary rehab, Kevin. Let us know how it is going for you and if it’s helping in any way.
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Kevin, that’s so true! Accepting the decrease in our physical activity is difficult. I hope that your rehab will help some. Best of luck to you, don’t push yourself!
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