December 27, 2018 at 12:10 am #15393
I’m in my fourth week on Uptravi and would like to hear from Forum members who have been through the 8 step titration protocol. What were your experiences? What helped you deal with reactions?
During week 1, I noticed where it making a difference but since then reactions have been overshadowing those perceptions. By now I have experienced most of side effects listed. Except for congestion and muscle/joint pain, not have been everyday or on the same days. This week, I’m spending another week step 3, taking 3 200 mg tablets 2x/day.
December 27, 2018 at 12:40 pm #15394MichaelParticipant
I started Uptravi in March 2016. At the time I was taking Revatio (20 mg X 4, 3 times daily), Tyvaso (10 breaths, 4 x daily), Opsumit (10 mg daily), and my PAH was advancing. The plan was to eliminate Tyvaso by titrating down while titrating up on Uptravi. When I got to 800 mcg X 2 daily of Uptravi, I experienced headaches and loose stool. I was taking Advil for the headaches. I powered on to 1,000 mcg X 2 daily and the headaches were intense. We held at 1,000 mcg x 2 daily for 2 weeks. 2 Advil every 4 hours could not control headaches. Also experienced muscle pain in my legs at night and the bottoms of my feet were quiet sore. We moved back to 800 mcg with little relief. Ultimately, we discontinued Uptravi and went to infused Remodulin via Hickman port. Symptoms were difficult at this point, felt faint with one set of stairs. Infused Remodulin gave me symptom relief quickly and it has since August of 2016. Today it’s Revato, Opsumit and Remodulin with good quality of life and symptom control, although my Pulmonary pressures are still quiet high.
December 28, 2018 at 7:23 am #15395Diana ProcopioParticipant
am also taking . I had titrated to 4 2 times a day, but had severe musclepain and weakness. I went to my GP about this. Uptravi caused a flare-up of my Polymyalgia rheunatica, so my Pulmonologist dropped me down to 3 2 times a day and my PC put me on prednisone and I’m feeling much better .
December 28, 2018 at 4:20 pm #15411
It’s always the worse when it interferes or causes a flare up of another condition. And when doctors are told about this , usually it’s like “here try this other medication to help balance the side effects” . Deep inside I wish I didn’t have to balance ANY at ALL. Had to get that rant off my chest lol!
December 28, 2018 at 4:25 pm #15412
I’m so glad to hear that you are managing better now and it seems like the doctors have a better grasp on the regimen for you that gives you a better quality of life. I know it must have been a headache (literally) in your case to keep titrating and trying new things. I have heard from others that headaches and joint pain were terrible. Were you given medication for this type of pain or was it just a “let your body adjust” deal?
December 28, 2018 at 4:18 pm #15410
I’m sorry that I can’t relate to this post but I know how hard it can be to titrate dosages to find the right one. It can be physically and emotionally so demanding. I’m so glad other forum members have (and will) be able to reach out to you in regards to this.
December 29, 2018 at 2:19 am #15419
Thanks all, These insights add to my understanding about the process and what to expect — or, like the sore bottoms of my feet, sharing a reaction not on the list. This also confirms that I might not be able to tolerate Uptravi. From all the cautions and following up, I suspected as much. Right now, I’m in my no step week until Monday morning and feeling much better than last week.
I’m also on Taldaldil and Letairis, which I started a month before the Uptravi. My GP is not particularly helpful unless you count the robocall from the local hospital’s pain management program trying to enroll me. The Accredo pharma nurses have been a good source of suggestions for dealing with reaction.
Trucking on. Next week awaits…
December 29, 2018 at 2:20 pm #15421
Best of luck to you next week Vanesssa. I know sometimes the primary care doctors can be so hard to get in touch with. Does your pulmonary team or primary care team have an online portal? Sometimes you can email them online through the portal. If you are unsure, definitely ask about it at your next appointment it has been a good tool for me especially when I don’t feel like listening to the whole “please hold , you are the 10th caller…(instruments playing in the background) lol I’m glad you have found some help though through Accredo in getting your questions answered. I’d much rather know what to expect when it comes to medications. All the best to you! Keep us updated!
February 2, 2019 at 11:30 pm #15702
A late — overdue — Uptravi follow up. I’m almost to the end of titration,just one more “step” or that I may spread over two weeks because I have an unavoidable but sure to be tiring day in the middle of next week that’s sure to exacerbate reactions.
I definitely identity with Michael’s “sore feet” description and call it “Uptravi legs” ~ aching leg muscles and joints, with hot, sore soles.
It’s been rough but not intolerable and looks like I’m going to make the optimal 1600/2x/day dose. A nurse from my PH team calls once a week, and I can call them directly. The Accredo Uptravi desk, staffed with experienced PH nurses, checks in weekly too and is available 24/7.
- This reply was modified 4 months, 2 weeks ago by Vanessa Vaile.
February 3, 2019 at 1:19 pm #15705
It’s great to hear that your team is so on top of your care. It’s great to have a group of doctors, nurses, and staff that are accessible and call to check in. I hope that you are able to save up some energy for your “tiring day” that you have coming up and that you are able to get some much needed rest and self care afterwards ! Keep us updated on how that goes. I’m sure others can relate to your “uptravi legs” and may even get a similar reaction to medications that are vessel dilators. I know when I was on medication that acted as a vasodilator, I experienced soreness and swelling of my calves to the point where I would sit down and immediately feel the discomfort. I remember feeling it more with rest for some reason (probably because I’d be thinking about it more) . I hope you continue to feel okay though and I hope the rest of this titration goes well for you.
February 21, 2019 at 11:36 pm #15916
Quick note ~ made it to day 5 of final week titration and on full dose, almost close enough to call although not side effect free. Reactions have been mostly manageable and only intermittently intolerable. I’ll want a few weeks on optimum dose to be sure though — don’t expect to be fully side effect free but do expect (hope) benefits to outweigh them. Exercise tolerance and with it, mobility and activity, are notably improved. I haven’t been able to test stairs yet since there are none where I live — on the list. Day trips with long car rides, rare and usually to Denver, are still quite draining but more manageable.
Good (telemedicine) support from PH and pharma teams has made a huge difference and, of course, not having to get up and out to cope with work or household on on worst days. Neither my primary nor the local rural hospital have been involved to any significant degree. I count myself very lucky not to have had any emergency. With that possibility in mind, I made sure Uptravi was on my medications list there.
- This reply was modified 3 months, 3 weeks ago by Vanessa Vaile.
February 22, 2019 at 7:18 pm #15935Kathleen ShefferKeymaster
Thank you for the update, Vanessa! I’m so glad you are seeing improvements and I expect the side effects will decrease as your body adjusts to a stable dose. Which side effects were intolerable for you and what did you do to get through them?
February 22, 2019 at 11:44 am #15924
It sounds like you are managing all of this so well and are trying to keep a positive attitude through the titration. I know it can’t be easy but I’m sure it will all be worth it. I hope that when you are able to do stairs you can do them with more ease! Seeing improvements is enough to drive you to keep pushing forward! Keep up the great work. I’m so glad your PH team is responsive and that we now have telemedicine to keep track of our progress and have more frequent “visits” online. Keep us posted on how things are going in the coming weeks.
March 3, 2019 at 2:25 pm #16038
I am beginning selexipag tomorrow, Monday, March 4. Frankly, I’m scared shitless. My body is especially susceptible to side effects from any and all medications, and I have stockpiled antiemetics, CBD, and am applying for medical marijuana here in Vermont, where, thank progressive politicians, it will eventually be totally legal, medicinally and recreationally (we just returned from a visit to Quebec City and yes, you can buy a wide range of MJ products in the designated stores, which I did visit but brought nothing home with me, of course).
Questions for anyone and everyone, please:
1. How long did it take for you to feel the selexipag began to work?
2. Did you experience the nausea and vomiting, and if so, how did you treat it?
My diagnosis for WHO Type 1 was made last August, but I had been symptomatic for 4 or more years prior, one thoracic surgeon telling me I had initial stage COPD after he removed a nerve sheath tumor from the underside of my top left rib. No, I don’t, say four PFTs, lung imaging, scans, and all sorts of cardiac tests. I have PH.
My wife and I are both disabled vets and are grateful for the support offered by the VA medical system. This entire country ought to be able to get the care I get, and I am happy to pay higher taxes so everyone can.
March 4, 2019 at 12:16 am #16039
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.
March 4, 2019 at 7:30 am #16040
Thank you, Vanessa. I just took my first pill. I already take protonix (a PPI) which I am told should help the stomach. I did eat something with the morning pills (a few more than just selexipag). My nose is my worst part. I tried ambrisentan in December and it was awful, so I stopped it. I hope this doesn’t cause congestion like that. I can’t breathe through my mouth to sleep… please do continue to write about it. And thanks again.
March 9, 2019 at 12:23 am #16192
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.
March 10, 2019 at 4:57 pm #16201
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.
March 23, 2019 at 11:24 am #16375
Hi folks. Sitting here just finished handicapping horse races and entering a handicapping contest while feeling like shit. Began 600 mcg Selexipag yesterday AM and am only on my third dose. Yesterday AM spent from about 11-2 in bed with a headache and very mild nausea. Evening dose (7 PM) didn’t really interfere with sleep at all. I took it at 7 AM but held off on my usual morning meds until 8:30. I still got the headache (pretty bad, even now; it usually starts 4-5 horus after the dose and lasts 4 hours) and the nausea is worse, forcing me to take an Ondansetron (Zofran). Does this nonsense abate as the body “gets used to” it? If not, I’ll be going to the infusions and inhalations, or just … well, we don’t talk about that here. The problem is my breathing is better, and I sleep better at night, and believe it or not, the nasal congestion I have experienced for years is better. So who else hates being sick?
March 25, 2019 at 8:37 am #16382
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!
March 26, 2019 at 5:32 pm #16442
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.
March 24, 2019 at 12:01 am #16377
I’m glad the breathing is better. Good thing you’re not still taking ambrisenten. It gets better, Kevin. As the dose increases, you’ll have side effects, but you’ll also have good days. Take care not to overdo on those. I think my 600 week was the worst for head aches and leg pain. I stayed at 600 for two weeks before increasing to 800, then half steps up after that if side effects were still strong at the end of the week. My second week on full 1600 dose, I took a day in the middle of the week with a half step back.
Try taking something for your headache before you take Uptravi. My nausea was mild. Tums with meds and meals did the trick for me.
You mentioned taking other meds. It might help to take once a day meds in the middle of the day. I started doing that with ambrisenten and tadalafil.
Do you notice the weather making a difference?
March 24, 2019 at 7:20 pm #16378
I think I figured something out. I have been taking my selexipag WITH my morning pills. (I’m now taking 600 mcg twice a day.) Four hours almost on the dot afterwards began three or four hours of a very annoying and debilitating headache. THIS morning, I took my morning pills at 6:30 and waited to take my selexipag at 9. I then took 1000 mg tylenol at 10:30 as a “just in case.” Result? NO HEADACHE TODAY. Will repeat tomorrow to see if it bears out.
I am also going to talk to Actelion tomorrow to see if any of my current meds are known to have interaction issue with selexipag. I’ve also contacted my pulmonologist with the same request, assuming he has resources we don’t regarding evaluating Rx interactions…
For the general interest, here are my current meds, should anyone know anything about interactions from some prior research:
Selexipag 600 mcg 7 AM & PM
Tadalafil 40 mg AM
Diovan 320 mg AM
Lasix 20mg AM
Metformin 500 mg SR AM & PM
Atorvastatin 20 mg AM
Pantoprazole 40 mg AM
Allopurinol 100 mg AM
Turmeric 1 gm AM & PM
Ginger 525 mg AM & PM
Testosterone 1.5 cc injectable every 2 weeks
B Complex vitamin AM
2 veg combo capsules AM
Melatonin 2 mg PM
CBD 20 mg if/as needed for nausea
THC, eventually, if needed for nausea (applied to VT marihuana registry for purchase and use)
P.S. I bought a banjo and am going to learn to play it. Like bluegrass music. Am a former orchestra and opera conductor and former organist and church music director. Love jazz, too. Peace.
- This reply was modified 2 months, 3 weeks ago by Kevin Smith.
March 25, 2019 at 8:42 am #16383
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!
March 26, 2019 at 2:23 pm #16424
Hi guys! Sorry I’m just joining this Uptravi conversation. I had a hospital visit recently and been recovering.
As far as the Uptravi, I’m on 1600mcg 2xday , the max dose. I know when I first started I didn’t get too many bad side effects until I got to about the 600mcg 2xday, that may be because I was switched from Orenitram and that was awful for me and my body just wasn’t liking that one, lol 😂
Vanessa, glad you made it to the full titration! I know as my doc has told me if and when the side effects become too much, you may need to drop down a little just for awhile to see if you body can readjust! I’m hoping by now you’re seeing results and side effects are not as bad !
Kevin, I definitely know it’s frustrating and scary at times with these new meds! They aren’t like taking an asapirin or Tylenol by any means! I’m hoping you can adjust but remember each of our bodies are so unique and adjust different. As far as any reactions, please speak with the speciality pharmacist as they are very good to educate and catch any issues. I know we have to be careful with our meds, even with vitamins and OTC medications!
I definitely continue to have side effects from my Uptravi , the sore and heavy muscles and jaw pain, which always likes to surprise me, lol 😂 but I may go days without it affecting me .
But in my opinion and for me the Uptravi with the heavy dosages of Revatio I take as well as other meds , see,s to be working well for my PH!
Best of luck to you both !
March 26, 2019 at 4:44 pm #16433
That’s awesome that you found a combo of meds that worked for you even if it must have been a long haul to get the right combo and the titration! It sounds like your doctors and YOU were right on top of the side effects that you were experiencing and they listened and lowered the doses when you needed it. Hopefully now you are seeing more improvements. Sorry to hear about your recent hospital visit and I hope you are on the mend now ! Thinking of you!
March 27, 2019 at 1:35 pm #16462
Jen, describing intermittently recurring side effects as “surprised by” nails it more expressively and in fewer words. I’d rather be surprised by jaw pain than diarrhea, not that there’s a “choose your surprise” option, but remind myself that it’s probably a quick drive-by, not hanging around or back for the count. “Oh no, it’s back,” was my reaction to the first “surprised by.”
March 27, 2019 at 3:14 pm #16466
It’s like your “friendly reminder” just stopping in to say “hey, I’m BAAAACK” lol! But it’s more like the annoying person that you don’t want around but can’t be avoided hahahaha. Like a pop up on a computer screen that just gets in the way. I wish there was a “choose the symptom” option! That would be wonderful!
March 27, 2019 at 3:35 pm #16470
Thanks Brittany, been thinking of you as well with all of your medical issues going on the last few months! 🤗
Vanessa, I’m glad you are feeling some results! Yep, those side effects as well as PH likes to remind us they are still there as I say, lol
Kevin, I understand your frustration, please knowse are here for you ! I agree with Brittany, if you’re feeling worse with the meds, I would not increase , I would be contacting my PH team and hopefully they can even get you in to discuss your concerns and maybe able to do more testing to better help you.
March 27, 2019 at 3:55 pm #16473
Thank you for all you support you show our members, Jen! We are so lucky to have you here!
March 26, 2019 at 4:35 pm #16432
Selexipag doesn’t seem to be working. My breathing is about the same as it was when I started, and the SOB on exertion is actually worse. I believe after doing some research and cataloguing symptoms that the wrong disease is being called “primary” in my case. I suspect, and will be seeking hematological proof, that my condition might be more appropriately called polycythemia, primarily. If it is so, and there’s no definitive way to prove which happened first, whether polycythemia caused PH or PH caused polycythemia it is a dead end, literally. Treating P like the blood cancer it is causes or worsens existing PH, and treating PH conventionally does nothing to stop P. So, if this is my case, I will be emptying my bucket list and preparing for the day I’ve had enough and end my own life. That wasn’t a statement of impending suicide. That was a rational statement that I see this isn’t going to end well or take long. In the meantime, I will consult with western *and* alternative medicinal practitioners to include traditional Chinese medicine (my wife was born in a China) and see where this possibly short journey leads. Thanks for the words of support but I don’t see myself posting much more here.
March 26, 2019 at 4:55 pm #16434
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.
March 26, 2019 at 7:51 pm #16446
Oops. Tried replying to @ksmith610here before heading out for my evening walk but checked when I returned from evening walk and didn’t see it posted.
The short version, Kevin: do check out the polycythemia with blood tests. Hang in there, we’re here for you. fwiw I remember feeling discouraged right at the point in titration where you are now. Is there a PH pharmaceutical support line with the VA?
March 26, 2019 at 8:56 pm #16447
Funny you should ask. There isn’t any corporate experience with or knowledge of PH in the VA hospital I use, so I went to Tufts where there are two known researcher-MDs there. I’m in my fourth week of Selexipag and I feel like week 0 because my deep inhalations aren’t as deep as they were last week and I feel that I have a higher floor below which I can’t exhale. Plus exertion is more limited than before. I am bothered, annoyed and a little frightened. I will begin 800 mcg Friday but am skeptical whether it will help.
Thanks to all the wonderful people here for all your kind support.
March 27, 2019 at 9:48 am #16450
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!
March 27, 2019 at 2:09 pm #16465
@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.
March 27, 2019 at 4:33 pm #16481
Thanks Brittany ! I really enjoy the forums and I learn from you all and feel the su as well !
March 28, 2019 at 7:09 am #16500
It makes my day (now morning) to hear that Jen! I’m so glad we have a space like this for each other !
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