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    • #29324
      Colleen Steele
      Keymaster

      My son learned early on that taking PH or transplant medications on an empty stomach is a bad idea. He has to have a little something in his tummy or he gets really nauseous and sometimes even gets a migraine. The thing is he’s not always ready to eat at that time. Saltines have always worked best for him…not exactly the most substantial thing to eat but better than nothing.

      What do you eat with your meds? What small snack or beverage to you consume when you aren’t up for breakfast, lunch or dinner?

      Reminder: Some medications need to be taken on an empty stomach so be mindful of this.

    • #29332
      Jen Cueva
      Keymaster

      Excellent question and reminders, @colleensteele. Usually, my breakfast is pills and coffee. My doctors tell me pills aren’t considered food, hehe.

      I do eat brunch when Manny is off. ON those days, I sometimes take my meds after I eat. For my afternoon and night meds, I do usually have a snack. It may be cheese and crackers, ice cream or something sweet, or graham crackers with peanut butter.

      When I was taking Orenitram, it was the worst at trying to eat before each dose.
      Overall, most of the PH meds work better with a little food in our bellies. Empty stomachs and pills are not usually a good combination. Unless, as @colleensteele reminds us, some are to be taken without food.

    • #29340
      Gayle Ward
      Participant

      I enjoy a special cookie with my meds in the morning and at night.Yum

      • #29358
        Jen Cueva
        Keymaster

        Hi @gward, would you like to elaborate a bit on your “special” cookie? Is it what I am thinking, or just a favorite treat of yours? It sounds like a “sweet” way to start the day and end it. Thanks for sharing.

    • #29342
      Colleen Steele
      Keymaster

      @jenc I forgot about graham crackers. Cullen use to like eating those with his meds when he was little. I should remind him of those. He might like doing that again. @gward I love the special cookie routine. It’s like a little reward for being good at taking your meds every day and on time.

      Cullen is not and has never been a breakfast person so the morning meds are the hardest on him. He usually picks something quick and not too filling to eat before them.

      • #29359
        Jen Cueva
        Keymaster

        Yes, @colleensteele, this is another thing that I share with Cullen. I do not eat eggs unless it is hidden in like a quiche, etc. Breakfast has always been my least favorite meal.

        Often I grab a handful of nuts and add dried fruit. I should add that to the other post. I forgot that one. I will eat a serving of nuts and a few pieces of dried fruit if we have it. As I would tell KK growing up, these are “brain ” foods, so that she would eat them before a test, lol.

    • #29350
      Bruce McDougald
      Participant

      I remember either reading, or being advised by my doctor, that it was best to have some protein in my stomach before taking my meds. Especially the morning meds (I take Adempas/Opsumit/Uptravi). So, even if I need to delay taking my morning meds for a little while, I try to eat eggs, or low sodium cheese, or even left overs from last night’s dinner first. If I eat only a small snack it’s generally not good enough for me.

      • #29366
        Colleen Steele
        Keymaster

        @brucemcdougald low sodium cheese is a good idea. Sometimes Cullen puts it on low sodium crackers and nukes it in the microwave for a few seconds.


        @upshtcx
        I forgot about bagels…those and English Muffins Cullen enjoys.

    • #29360
      Jen Cueva
      Keymaster

      Hi @brucemcdougald, yes, you are correct. My previous long-term PH doctor always said to eat some but of protein that helps digest the meds and decrease the side effects in most instances.

      I like that you mention leftovers. I have been known to eat leftovers about brunch time, 10-1. I now know that I am not alone. Thank you for your tips. What are your favorite leftovers?

      I think the Accredo pharmacist also made that comment on some of my PH meds.

    • #29365
      Jill Upshaw
      Participant

      I try to always eat something with my meds. I try a small breakfast if I can. If not, I try to keep pudding cups, crackers, and bananas on hand. I really don’t tolerate fruit very well but sometimes fresh pineapple tastes really good since it is cold and sweet. I really have never eaten salt so my crackers are plain. I also try to keep bagels around. I don’t really eat meals anymore for the most part. I just try not to have an empty stomach.

      • #29375
        Jen Cueva
        Keymaster

        Hi @upshtcx, you mention that you don’t eat meals anymore. Is this because it is too much for you to chew, etc.? I often eat like a toddler and graze throughout the day. I rarely eat a full meal, either. Mine is usually related to nausea, bloating, or just the energy it takes to eat. It is great not to have an empty stomach, if possible, with most of our PH meds. I also like bagels, toasted with veggie cream cheese. I will maybe eat half at once.

        Hi @s-steppins, I am happy that you do sneak in a banana, at least if you are in a hurry. I am not a banana fan, but my hubby eats one every morning. Do you make your own PB or buy the natural ones?

      • #29376
        Jen Cueva
        Keymaster

        Hi @upshtcx, you mention that you don’t eat meals anymore. Is this because it is too much for you to chew, etc.? I often eat like a toddler and graze throughout the day. I rarely eat a full meal, either. Mine is usually related to nausea, bloating, or just the energy it takes to eat. It is great not to have an empty stomach, if possible, with most of our PH meds. I also like bagels, toasted with veggie cream cheese. I will maybe eat half at once.

        Hi @s-steppins, I am happy that you do sneak in a banana, at least if you are in a hurry. I am not a banana fan, but my hubby eats one every morning. Do you make your own PB or buy the natural ones?

        • #29381
          Jill Upshaw
          Participant

          I don’t avoid meals but I fill up really fast and if I eat too much, I tend to get chest pain so I avoid that at all costs. I also get indigestion really easy and it takes so much energy to eat sometimes that it has little appeal. I really just try to avoid problems and manage my meds. Seems like small amounts of food at one time is the answer for me.

        • #29411
          Jen Cueva
          Keymaster

          Hi @upshtcx, I, too often, get too tired of chewing. Soups, mainly with veggies and low sodium versions, help me get some nutrients in. Smoothies are another source for me. My hubby says I am like a. toddler. I even eat on a small plastic kid’s plate.

          What are your doctors saying about indigestion? Anything that you can take to help? Is the chest pain related to indigestion or your PH? Please be sure that your PH team is aware.

    • #29368
      Susi Steppins
      Participant

      I am a breakfast eater.
      But if I am in a hurry I will at the very least eat my daily banana right after I take my meds.
      Natural peanut butter on a cracker can work too.

    • #29380
      Carol Volckmann
      Participant

      I opted out of taking the oral remodulin as it was so regimented – it to be taken every 8 hrs. 3x/day and with a lot of protein. I really was not comfortable in waking up at 6am and eating peanut butter or such again at 2 then 10pm. Plus we did a lot a traveling prior to covid and changing time zones was also going to be an issue. So the meds I take w/remodulin, Letairis and Adcirca do not require a must to eat. Great topic and how each of us have great tips – at least all you guys have given great tips. Thanks 😊

      • #29397
        Colleen Steele
        Keymaster

        @cdvol3gmail-com Cullen has always been so good at taking his medication every day and on time, even as a child, but the 3x’s a day ones have always been a struggle for him. It was the middle of the days ones he would sometimes forget or take late. Alarm reminders weren’t helpful because he would turn them off, finish what he was doing, then forget to take them. Luckily he hasn’t been on 3x’s a day meds for over a year now.

        I would imagine changing time zones when traveling really complicated your medication schedule. I hadn’t thought about that. Any tips on how you have dealt with it in case anyone has travel in the future on their agenda?

    • #29385
      Valerie
      Participant

      This is a daily very relevant topic. I never take pills on an empty stomach.
      Colleen, I totally understand your son who gets migraines after taking pills!
      I take sildenafil morning and evening. I divide each pill into the appropriate doses (I don’t drink the whole pill in one go;I take as much as I can take). I divide the necessary dose in half, and take each piece with a meal with a difference of half an hour (it feels like I’m constantly eating). I do not tolerate a lot of food, so I usually take one half of the dose of the pill during breakfast/dinner, and the second part of the dose I wash down with tea and eat homemade cookies (I know exactly what is in the composition of this).
      I’m also very careful with the pills. If I drink some type of magnesium or l-carnitine, I also do it during meals or right before meals. Pills can kill our stomachs! I probably killed my stomach in 10 years of taking pills, and now I can’t even take Proton-pump inhibitors (this also causes migraines).
      And, of course, I try to maintain the same interval when taking sildenafil – if I took a pill at 8 am, then take the next one at 8 pm. If something unexpected happens in the evening and I take a pill late, then I will eat a cookie (even at 12 am).

      • This reply was modified 8 months, 4 weeks ago by Valerie.
      • #29398
        Colleen Steele
        Keymaster

        @valeriekv migraines kept my son out of school more often than his PH did. They can get really bad, especially when adjusting to dosage changes. You have his and my sympathy.

        Post-transplant a neurologist put him on Topiramate. He had to keep going up on the dosage but finally hit the sweet spot a few years ago. It has helped him so much. He still gets headaches a few times a week but nothing compared to the chronic migraines he use to experience.

        I don’t know if topiramate is ok to take when you have PH but it wouldn’t hurt to ask your doctor. I have the feeling it might not be an option. Cullen’s PH doctor didn’t want him on any migraine treatments but he also had Long QT and that limited his options as well.

    • #29401
      Carol Volckmann
      Participant

      Hi Colleen, to answer your question, time zones and medications do not do well especially when the meds must be 8 hours 3 times a day and with enough food that the meds will be tolerated. The only way I was able to do it was starting ahead of when we were going to be in a different time zone. If traveling East 3 hr ahead of us, I would start taking my meds instead of 6am I would push it 1/2 he and so on. It became really awful till I opted out of the oral Remodulin and was on subq then IV both difficult but I know my main medication is continuous. My other meds for PAH I take once a day in the morning.

      So happy to hear Cullen no longer is struggling with chronic migraines. I have also heard that migraine meds are not recommended for PH folks. Fortunately I only have headaches, – I deal with that.

      Best to Cullen, yourself and your whole family. Lots of hugs!

    • #29404
      Valerie
      Participant

      Colleen, I am very happy for your son! Luck is sometimes the only thing we all need!
      Carol, I’ve also heard that migraine medications are not recommended for people with PH. Many of these pills are designed to suppress the activity of glutamate in the brain. Therefore, instead of taking migraine pills, I cancel the probability of taking products with glutamate. Glutamate excites neurons and blood vessels, and migraines occur due to a sharp expansion of the blood vessels of the brain.
      I also divide one dose of sildenafil tablets into parts, as a large dose can dramatically dilate the blood vessels.

    • #29405
      Carol Volckmann
      Participant

      Hi Valerie, very interesting info on glutamate, I did not know that. When I was first diagnosed I was put on sildenafil. Later my new Pulmonolgist put me on Adcirca instead because adcirca is time released where sildenafil hits your system all at once. You might ask your doctor about that and it maybe that you not have to split your sildenafil. Don’t know if that would help you, but maybe worth asking. I take my adcirca once a day in the morning. Thanks for your information – stay well, stay safe.

      • #29408
        Valerie
        Participant

        Carol, thank you! When I finally get to see some new doctor, I’ll definitely ask about it.

      • #29420
        Jen Cueva
        Keymaster

        Excellent tips, @cdvol3gmail-com. I am sure that @valeriekv appreciates your suggestions. You are correct about Revatio (sildenafil) versus Adcirca.

        I love to watch our members support each other. It makes my heart happy. Thank you all.

        Please keep us posted @valeriekv. When will you see the new doctor?

        • #29470
          Valerie
          Participant

          Jen, thank you for your concern, too! The question with the doctor is my main problem, since I don’t go anywhere. To get to my medical center, I need to drive more than a hundred kilometers and sit in a long queue (a crowd of people!). I am afraid of this, so I have not been to the doctor for a long time, and I do not know when I will get an appointment. But I have already accumulated a lot of questions to the doctor! It will be a very long reception 🙂

        • #29483
          Jen Cueva
          Keymaster

          Hi @valeriekv, I am sorry to hear about issues with seeing a doctor. Do y’all not have telehealth visits available? That is the positive thing that came from COVID; more people have access to doctors. This sounds like you could benefit from a visit or two.

          I’m sure that you probably have a list of questions written down. I have those lists when I do telehealth visits. I make comments on my question sheet as we do the visit, asking them until I am done. Just last week, I was ” just one more question” about 3 times, LOL.

          Please let us know what we can do to best support you.

        • #29495
          Valerie
          Participant

          Jen,
          Unfortunately, telehealth is not available to me. Even my attempt to make an appointment with a general practitioner over the Internet caused such indignation among the people in the queue and the general practitioner himself. So I’m just waiting for the opportunity to get to the doctor in person.
          It is very wonderful that you ask questions to the doctor! Who better to feel our bodies than ourselves? I’m just saving up questions, for now. I hope that at some point I will get an appointment with him.

        • #29500
          Colleen Steele
          Keymaster

          @valeriekv I hope the doctors who turned down telemed appointments are ones you aren’t established with yet and not ones you have previously seen. You mentioned the travel distance being an issue and I can certainly understand that. But hopefully once you are able to be seen in person they will be more willing to arrange future telemed appointments. If not, well that’s crazy, especially considering Covid.

        • #29519
          Valerie
          Participant

          Colleen,
          Unfortunately, telehealth is not very well developed in our area. I could write to my doctor by e-mail or call in a difficult situation earlier (she helped just out of her kindness). But our visit to the doctor is not a Skype call. This is a lot of time, a long queue and 10-15 minutes of personal communication. I hope that the situation will change someday 🙂

        • #29524
          Colleen Steele
          Keymaster

          @valeriekv I’m sorry you don’t have that option. I do hope it becomes available to you in the future. How are you feeling this week?

        • #29529
          Valerie
          Participant

          Colleen,
          Thanks! I hope so, too.
          I feel as normal as possible. But now it’s March and April is ahead. These are usually the most difficult months. For some reason, in March and April, the body has little strength. You too?

        • #29536
          Colleen Steele
          Keymaster

          @valeriekv when my son had PH it did see around April he would really run out of steam, and honestly I would too. I think it’s the change in weather, day light savings time, and just the thought of a change in routine as summer approaches. It’s almost like the run down feeling you have for a while after recovering from a bad cold.

        • #29541
          Valerie
          Participant

          Colleen,
          I’m glad to hear that this isn’t just happening to me. But I’m sorry your son feels that way, too.
          I totally agree with you (weather, light, routine). I think it all accumulates and many people have little energy therefore.

    • #29533
      Jean
      Participant

      I take most of my meds with my breakfast, so yes. I take Sildenafil three times a day so the second with an afternoon snack and the third before bed with a cracker or a little cheese. Easier on our stomachs I think.

      • #29534
        Colleen Steele
        Keymaster

        @jeanl totally agree! If we aren’t at home and Cullen needs to take his meds but hasn’t eaten, he would rather be a little late taking them than take them on an empty stomach and risk throwing them up.

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