Viewing 12 reply threads
  • Author
    • #12145
      Kathleen Sheffer

        Any other patients here experience jaw pain? Before my transplant when I was on Flolan and later Remodulin, every time I started eating (or even thought about starting to eat), the sides of my face/back of my jaw grew painfully sore. It’s one of the strangest sensations I’ve ever felt so it’s difficult to describe.

        It’s a real thing, though! Jaw pain is listed among common side effects of PH medications, especially IV therapies. I was never not on IV therapy so it’s possible there are other PH therapies that have the same side effect. Please chime in here if you are not on IV but also experience jaw pain.

        I read here that, “Jaw pain is a side effect unique to prostacyclin pathway
        therapies and often occurs with the first bite of a meal. It is
        generally not dose-limiting and can usually be managed by
        taking slow bites, sucking on a saltine cracker or a hard
        candy, or chewing gum before eating.”

        Still, other PH therapies (Letairis, Revatio, etc.) list it as a side effect. I’m guessing that’s because patients are on multiple therapies and the cause is unknown. Again, I’d be interested to hear if you have experienced this side effect while not taking Flolan, Remodulin, Ventavis or Uptravi.

        Do you experience jaw pain? How do you handle it? Have you found ways to make it less painful?

      • #12160
        Robin Taylor

          Yes. Mine started with Opsumit…it was fairly mild. Then I started my ramp up for Uptravi, it became very painful. The pain continued through every dose increase. I started chewing gum again and it helped a lot. The first bite of the day is the worse. I have reached the final dosage and have been maintaining it for three months. It seems the jaw pain has dissapaited with only a flare here or there, so many the body gets used to it?

          • #12161
            Kathleen Sheffer

              I’m glad it’s getting better for you, Robin. Yes, it’s definitely at its worst while titrating the medication. Interesting tip about chewing gum! My solution would probably be to just constantly be eating so I never had a first bite. Hah!

            • #12174
              Pete Gibo

                Hi Kathleen
                I was given Flolan for 5 days I.V for CREST last December I told the doctor about the Jaw pain He said he hadn’t come across it before , I thought my jaw was locking a bit scary to say the least .
                I thought I was alone with this sensation “obviously not! Its coming to the time for the next course of Flolan ! six months have passed . It’s reassuring knowing that your not alone with this feeling flolan creates .
                I hope all goes well for You and all others in this Group.

                Thanks for the post

                • #12191

                  Hi Pete. As difficult as it is to experience symptoms, it is always reassuring in a way to know that others are going through something similar. You can always find good connections here and most people are very open with what they have been experiencing. With anything though, definitely bring it up to your doctor and ask if there are any concerns at your next appointment or if they have recommendations to help that!

                • #12236

                    I have it since first starting on i.v.Veletri this april. Horrible pain. Like someone punched me from both sides of my face with big hammer. I have to punch a table with my fist how strong pain it is and shut my eyes. And no doctor told me about it. I was in shock. Despite being hospitalized in the Centre for pulmonary hypertension in Olomouc. I have it every time I bite into food or when I drink a little water. Every time. In the morning my jaws are put so tightly together I have sometimes problem to open it enough for breakfast.

                  • #12238

                    I’m sorry your pain is so hard for you to manage Martina. I wish I had some suggestions! I would try doing things like smoothies in the morning or something that you can blend up. People can pack a lot of great nutrients and protein into a smoothie or find a protein shake that you may enjoy. This will help you to have energy on the days your jaw hurts too much! Just as suggestion to make sure you have as much energy as possible to get through this discomfort .

                  • #12277

                      Thank you. So far I also “enjoy” loss of appetite. Everything tastes like ash. I am still in depression, I cried yesterday evening. I visited my psychiatrist on thursday and she reminded how nobody, including her, believed me, my medical issues, no doctor and every one thought it´s psychosomatical problem. She wanted me hospitalized on psychiatry, that it had to be anxiety issues. Pulmonary specialist was only changing inhalators, it didn´t occur to her at all, that it can be pulmonary hypertension, despite fact that I had like 90 percents of symptoms. I was on cardiology 14th july 2017 and doctor didn´t see any problem on echocardiograph. I am still pissed on her. If she did her work, I wouldn´t be in the worst phase of PAH like I am now.

                    • #12285

                      I am so sorry this happened to you. Like you, before my diagnoses I was told that my symptoms were “all in my head” by a few ER doctors and really took this to heart. Little did they know that I was having build up of co2 and lower oxygen levels causing me to be even more depressed and anxious with an altered mental state that goes along with differences in blood gas levels. It is so sad that there are people out there that are so quick to diagnose a mental illness without doing a full workup on a patient . Sometimes I find myself really thinking about these experiences a lot but then I have to stop and remind myself that the team of doctors I have now and my therapist all know that I have serious conditions and are treating me for it. I hope that you continue to get better support from your medical team and that you have a psychiatrist and therapist who believe you and know that this is all so hard. We are here for you!

                    • #12289

                        How often do you visit your PH specialist? I was there on 17th May and go again on 10th July. I would expect that it would be more often. And then it would be once in 3 months. Doctor didn´t even do echocardiograph on 17th May, he didn´t do anything and was very surprised when on his question, how do I feel, I responded, that badly. I have problem to walk few meters on straight street, I am totally unable to get to bus stop on the hill. When it´s raining or will rain I feel awfully. I sat in my chair, where I basically live, head on the chair and was unable to move for lack of oxygen in my brain. My heart is beating horribly even when I don´t move, only sit.
                        Pulmonary doctor said that per rentgen both sides of my heart are much bigger, not only right side. I am unable to do any physical activity, I wanted to help vacuum, but then I was out of myself for half an hour.
                        It seems to me that my doctor and nurse behave like PAH is no big deal, when it´s not sure (not to me), if I will live to end of the year. Younger people died on PAH (sorry, I am not positive person, I refuse to lie to myself). Yes, some people live with this for 20, 30 years, but some really don´t. I saw czech documentary, with two people with PH, 49 years old men went on difficult operation, he is now perfectly ok, young woman under 30, probably with type arterial, died on the end of documentary.
                        Everyone with PH is in different medical condition, but doctor and nurse really behave, like everything is ok. I don´t like mistakes in logic and people don´t like, when I say it to them. On the one hand, doctor says to me, that I am in the worst phase, that I would die in few months without being diagnosed and that Veletri takes months and months to take real effect and on the other hand they behave like I should already feel ok, surprised, that I have problems, surprised, that I suffer those horrible side effects. I am not sure, they really care about my state. And there are only three doctors specialized on PH in the Czech republic. I can´t go to other two. I am dependent on my old mother. During staying in the hospital, I saw my specialist only three times. When he did echocardiograph on me, when he did cathetrization on me and then he once came, but I literally don´t remember anything he said to me because of psychological state I was in.

                      • #12304

                        Hi Martina,
                        I see mine every 3 months and if i need to see them sooner i call and explain everything that’s going on. I think you should def keep track of all your symptoms and things you experience and keep it in a journal so you remember it and can bring it with you to the doctors.

                  • #12167

                    Sometimes I get jaw pain when my oxygen levels are low or when I have been coughing a lot. I don’t get treated for it or bring it up much to my doctors. I only report it to them when it is accompanied by neck pain or shoulder pain. With having a heart condition, it gets tricky for me to tell whether or not a symptom like this is heart related or more related to the pulmonary stuff! The joys of more than one chronic illness, right !?

                  • #12171
                    Kaye Norlin

                      I had it when I started Opsumit, then Orenitram, and Flolan. It was manageable for me, usually with the first bite but sometimes through-out the meal. Small bites and pushing on the area of the jaw while chewing at the beginning of the meal helped a lot. The pushing on the jaw really helped. I also drink protein shakes and that helped too. I am not sure if sucking through a straw helped or not- don’t remember doing that often, usually I chugged the drink so I could go to work.
                      Brittany, I completely understand not being able to tell the source of the problem and not telling your doctor everything. Eighteen months ago, I had a problem that I thought was my cancer returning and I didn’t bring it up to my PH docs. I did see the gastroenterologist and he actually picked up that it was the PH. It almost killed me before they could turn it around. Please tell your doctors everything.

                      • #12192

                        Kaye, wow ! That must have been a really frightening time for you. I can’t even imagine trying to play the “guess where this symptom is coming from” game with yourself after going through cancer and this PH! I’m glad that you seem like you have good doctors who see the connections with PH and other parts of the body. That is so important !

                    • #12172

                      I was on Remodulin for 8 years. I always had that weird sensation around my jaw and I never knew what it was. I finally asked my Dr. and he told me it’s jaw pain. I asked him what that actually means and he explained it as sort of like the sensation of sucking on a lemon. Haha. And it was probably the best way for him to describe it and it made sense to me. I was like, “yes! That’s what it seems like! But more painful.” Hahah. I always got it with my first bite of food sometimes it wiuld be just for a quick second and others would be like 30 seconds. So I would grab my jaw where it hurt and rubbed it and winced. My husband would look at me and say, “jaw pain?” I’m just glad he understands everything about me and my condition so it makes my days and nights a little better when I feel awful. I had successfully transitioned off of remodulin to orenitram in September 2017. I still get jaw pain, so now I’m used to it. It’s bothersome but what can you do?

                      • #12193

                        Hi Diane,
                        not sure if there is much they CAN actually do for this. I am really glad that you have good support and that your significant other is understanding. It certainly makes a world of difference when people recognize when you are struggling and help you to identify things about how your feeling. Feeling validated is very important to me.

                    • #12187
                      Charlotte Gilbert

                        I still get jaw pain every once and a while…( on veletri) I’ve learned to push on the sides of my jaw inward, say a few cuss words and it’s fine…

                        • #12194

                          Charlotte, I like your response! Sometimes you just have to swear it out! Frustration sometimes gets the best of me !

                        • #12210
                          Kathleen Sheffer

                            Hahaha! This is the best solution yet.

                        • #14456
                          Jen Cueva

                            Omg , I definitely still get the jaw pain, it’s definitely real…
                            My Daughter and husband will often ask if I’m ok, but then they are like ohh…Jaw pain…
                            I do notice when I eat more with my meds, the side effects are less, such as the jaw pain and leg pains.

                            [email protected] describes , its fast and usually the first few bites of something. You’ll definitely know if you’ve had it, it’s funny the Pharmacist explained to me prior to Orenitram, she said you’ll know and described it as one patient told her, “ almost like you just bit into a lemon “ ….so I knew exactly what it was the first time it happened.

                            • #14478

                              Hi Jen,
                              Oufffff! I’m cringing just thinking about the “biting into a lemon” comparison. I totally can understand that now!

                          • #14507
                            Jen Cueva

                              Lol Brittany, that definitely made me realize that was what I was experiencing the first time it happened, that Accredo Pharmacist was awesome!

                            • #32453
                              Jen Cueva

                                Does anyone else have intermittent jaw pain? I am not titrating but often get jaw pain. It is usually with cold foods, first bites, etc. I have not tried gum-chewing but will try it.

                                I haven’t been a gum chewer in a while. But if it helps, I will start back, LOL.

                                It always shocks me when I haven’t experienced it for days, and then it pops up- not the best surprise, LOL

                              • #34406
                                Jen Cueva

                                  While dining with my family this last week, they both noticed when I cringed after a bite of my ceviche. It was the dreaded jaw pain that I continue to experience, just not as often. They both recognized what was happening after a few minutes. It’s nothing new.

                                  It’s usually the first bite of food and is short-lived, but it’s annoying. Do you continue to experience jaw pain, even after titrating to your optimal dosage with treatments?

                                  Have you tried drinking a sip of cold water first? What about chewing gum?

                                  • #34409
                                    Colleen Steele

                                      Agh, sorry to hear about the jaw pain, @jenc! I know it’s a common side-effect of PH medications (Cullen experienced it too) but what I always worried about is what if it’s heart related? Jaw pain is a heart attack symptom, especially in woman. Have you ever asked your doctor if there is way to differentiate between the two? Darn PH makes everything so complicated and worrisome!

                                      So, what where you eating?

                                  • #34415
                                    Jen Cueva

                                      Hi @colleensteele, thanks so much for your support. I am sorry that Cullen experienced the dreaded jaw pain with his PH treatments.

                                      I was eating ceviche when it happened. It’s become one of my favorite summertime meals while sitting outdoors in the beach towns. I have one specific spot that I am always drawn to, and this is my order with a side salad most often.

                                      You make an important point- jaw pain is a symptom that some women notice with heart attacks. This jaw pain usually radiates from the chest pain, so it is slightly different. The jaw pain from the PH medications I experience is like “just biting into a lemon,” which is much other than any chest pain that I’ve experienced.

                                      But if one doesn’t know how to differentiate, this could easily be mistaken in women for heart attack symptoms, not jaw pain related to PH treatments. Plus, we are all different. Excellent point and educational moment, @colleensteele.

                                    • #34421
                                      Sally Hoffman

                                        Funny this topic is here today.  Yes, I, too had the jaw pain while titrating up on Uptravi.  It mostly has gone away, today it was there for the first bite of my lunch.  When it happens I just cringe and wait it out.  It does go away quickly.  Good luck and hang in there.


                                      • #34424
                                        Jen Cueva

                                          Hi @mainegal, I’m sorry that you experienced the same jaw pain yesterday. It’s usually that first bite that will get you, and waiting it out is thankfully short-lived.

                                          Isn’t it great not experiencing it like it was while titrating? But when it pops up, it startles me and reminds me that these medications are going through my body.

                                          Hopefully, this annoying side effect won’t pop around too much for you.

                                      Viewing 12 reply threads
                                      • You must be logged in to reply to this topic.

                                      ©2023 KLEO Template a premium and multipurpose theme from Seventh Queen

                                      CONTACT US

                                      We're not around right now. But you can send us an email and we'll get back to you, asap.


                                      Log in with your credentials


                                      Forgot your details?

                                      Create Account