This topic contains 19 replies, has 9 voices, and was last updated by  Jen Cueva 11 months, 3 weeks ago.

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  • #12145
     Kathleen Sheffer 
    Participant

    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 
    Participant

    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 
      Participant

      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 
      Participant

      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
         Brittany Foster 
        Keymaster

        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
         Martina 
        Participant

        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
         Brittany Foster 
        Keymaster

        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
         Martina 
        Participant

        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
         Brittany Foster 
        Keymaster

        Martina,
        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
         Martina 
        Participant

        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
         Brittany Foster 
        Keymaster

        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
     Brittany Foster 
    Keymaster

    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 
    Participant

    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
       Brittany Foster 
      Keymaster

      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
     Diane Enriquez Chung 
    Participant

    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
       Brittany Foster 
      Keymaster

      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 
    Participant

    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
       Brittany Foster 
      Keymaster

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

    • #12210
       Kathleen Sheffer 
      Participant

      Hahaha! This is the best solution yet.

  • #14456
     Jen Cueva 
    Participant

    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
       Brittany Foster 
      Keymaster

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

  • #14507
     Jen Cueva 
    Participant

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

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