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    • #27339
      Jen Cueva
      Keymaster

      Often, I have muscle aches and pains, and I already take gabapentin. My body can not tolerate the increase in this medicine. So, I have tried roll-ons and cream muscle relievers with no relief. I have used Biofreeze, Aspercream, a magnesium-based gel, thus far.

      This pain for me lately has been across my shoulders and back. It is not new, just struggled with this most of the weekend. Do you experience pain across your shoulders and back at times? If so, what have you used that has offered relief?

      I know that there are many other creams, gels, etc . that others have used and may be helpful. Let’s talk about this.

    • #27341
      Sally Hoffman
      Participant

      I know that quite a few of you are taking Uptravi. I have some questions about your titration. I am now on 1000 mg. This time there have been no headaches. (probably because I was held on 800 for a month), but now I am having big problems with my legs. Did any of you have this, or what other problems. How long did it last? What did you do?

      Today my Nephrologist asked me to ask the group if Uptravi caused any of you to have a rapid heart beat.

    • #27346
      Jen Cueva
      Keymaster

      Hi @mainegal, I am happy that you posted as I needed to check in to see how you are doing after your kidney surgery.

      I am on Uptravi 1600mcg twice per day. I am sorry to hear of your leg pains. It is not uncommon with several PH meds. Usually, it will decrease a bit as your body adjusts to a new dosage. I do have a lot of muscle aches and pains. I take gabapentin to help 3 times per day. Often, my legs will feel heavy. Are you experiencing anything similar? Leg and arm pain, jaw pain, and joint pain are common side effects of Uptavi. Do you take it with a little bit of food? I also try those muscle rubs all over my legs, lol.

      I already have a rapid heart rate, so I don’t think that Uptravi adds to that. I tend to have an HR of 118 just washing dishes at times. Many with PH have a rapid heart rate, which is related to PH. Everyone is different, so it could be causing it if this is a new problem for you. Are you taking any steroids or anything else that may increase HR? You should mention this to your PH doctor if this is new.

    • #27358
      Sally Hoffman
      Participant

      Hi, Thanks for your answer Jen. Today the leg pain stopped. But we all decided to wait another week before going up to 1200 on the Uptravi because, again, I had so many other issues. It appears that I do much better when I two weeks before triturating up. Did any of you have to break up the weeks, or could you just plow through to 1600.

      The kidney stent must be doing okay, as the kidney doctor said I might not have to go on dialysis. Yea!! New hope.
      Sally

      • #35565
        ky
        Participant

        Hi @Sallyhoffman My husband has been stuck at 1200 at night and 1000 mg Uptravi morning for quite a while now every time he tries to move past it he just can’t get out of bed … so far … giving it another week and then his team recommends that he only does 1200 morning and night every other day for two weeks before we talk about what to do from there. There is no right way or specific way to titrate it is so individual! We are on our titration journey as well! Oh Protein and fat, peanut butter on toast with the meds or egg sandwich.. in a pinch a good protein bar has really helped with some of the other side effects

        • #35589
          Jen Cueva
          Keymaster

          Hi @kygon, yeah, each person titrates differently. Some I know never get to the total dose of 1600 twice daily. Ky, it may be that Bryan stays on the does he is at if he is doing pretty well at that dose. That would be his maintenance dose.

          I knew a few who stopped at 800 and 1000 twice daily and have been on it for several years. This leaves more meds to add later if needed. Thanks for sharing your experience, Ky.

    • #27374
      Jen Cueva
      Keymaster

      Hi, @mainegal, I am happy to hear that the leg pain stopped. You ask if anyone help off on weeks. I did, and I encourage everyone when titrating to do the same. Often our bodies need a bit longer to adjust. I think that I held off a week extra with several doses. I also know a few PHriends who stopped at 800-1200 mcg, and this was their optimal dosage. So, keep that in mind, too.

      My PH doctor told me to do when the side effects became overwhelming, and I could not function some days. I also learned that have a high fat snack with a whole-grain helped, too. So, yes, I would say that everyone is different, and if you see the positives from a dose, you may want to hang out there for a more extended period to see if you do not need the maximum dosage.

      That is a huge weekly win that your nephrologist said you might not need dialysis. I will hope and pray that this is the case for you. When do you follow-up with him/her? Take care, and please don’t push your body while titrating.

    • #27386
      Sally Hoffman
      Participant

      Hi Jen, Thank you for the advice about the high fat snack. That makes sense. My internist gave me the okay today to try medical cannabis for pain and sleep issues. Has any one tried that? Have a great day. Be well everybody.

    • #28115
      Parthenia Turner
      Participant

      I wasn’t sure why my back always starts to hurt between my should blades. It feels like a blow torch. When it gets to bad I lay on a heat pad. Nothing else I have tried helps.

    • #35557
      Kelly
      Participant

      Hi!!!  I too have muscle/joint  pain in my neck, shoulders, and back  the most.  The rest of my body hurts but not as often or as severe.  I read the conversations here and am still wondering if the pain is from PH or PH Meds?  I still haven’t been put on any medications specifically for PH as I am newly diagnosed and still trying to find a good fit with a PH doc. I too take  gabapentin, as well as Diltiazem,  hydrochlorothiazide ,  and other meds not related to PH at all.  I had major muscle pain before I ever felt symptoms of PH.  I wonder if the muscle/joint pain in my neck, shoulders, and back were in fact symptoms of PH?

    • #35558
      Karen Endelman
      Participant

      I use both Aspercream and CBD oil.  I used to take Advil or Aleve but I have a kidney being removed (not PAH related) and the doc said not to use NSAIDS.

      • #35560
        Colleen Steele
        Keymaster

        Thank you for sharing @karene. I was wondering if there is a certain kind or brand of CBD oil you use. I’ve noticed Walgreens sells some. (A high theft item I guess because they are under lock and key). There are several kinds. Do you have a preference?

    • #35561
      Colleen Steele
      Keymaster

      @kelly history is just as important as the present so this is worthy of discussing with your doctor. My son complained of muscle pain prior to diagnosis. There are a number of things that can contribute to it. I think for him, his enlarged and overworked heart made him feel it in his neck and back, especially when lying down. Dehydration can also intensify muscle pain, especially when on diuretics. But with some minor google research I found a few articles (from sources I’m not real familiar with) that mention a link between muscle pain and PH.

      Here is one of the columns I read that I found interesting.

      Musculoskeletal pain common in patients with PAH

      • #35567
        Kelly
        Participant

        @colleensteele thank you!  I will follow the link and read up on this topic for sure!  Thank you so much!

      • #35590
        Jen Cueva
        Keymaster

        Hi @kelly, Colleen has offered a great source of information regarding pain. I, too, have an increase in muscle aches and pains when I am dehydrated. But my PH medications also have that as a side effect; it’s difficult to pinpoint what is the culprit, especially as we age. I read that @kygon, and it was calling my name. Tell me more about the massager; as Manny experiences migraines, what supplements do you use for turmeric and black pepper, or do you drink a concoction, etc.?


        @mrperry009
        , I love your user name; BTW, I would also like to know which CBD oil you have found that helps you.

        Thanks to you all for sharing your experiences with muscle pain.

    • #35569
      ky
      Participant

      I tried to post this yesterday but I guess something went wrong: My husband has found that massage is the best medicine for his pain and although I try I can’t give him the length and deep tissue needed all the time we have a deep tissue Toloco massage gun and he calls it his best friend, lol we also have the Jeanie Massager (a bit more pricey and that one you really need your care giver to use on you) but it is magic for headaches and shoulder and back strain and pain, my husband has me hold it just on the base of his scull when he has migraines usually 10 min does the trick.  We also have an electric blanket with a auto off timer so he can just fall asleep with it and then turns it on again when he is waking up. The other thing we both do is take Turmeric with black pepper  its an all natural anti inflammatory and it has made a big difference in both of our neck and shoulder aches my chiropractor recommended that and liquid collagen because with age all our joints get depleted of collagen and that is the lubricant for all our joints … hahaha I thought he was telling me I looked old- just thought I would let everyone in here know that since PH or not aches and pains are a problem. I also highly recommend a chiropractor (but look at reviews and go to one with 5 star ratings) and if you find one that does acupuncture definitely try it, that is like the best because they can really set the adjustment so it sticks! Bryan goes several times during titration and its very helpful he also has a hot tub set to cool and loves to soak and get more massage hahaha

      • #35573
        Colleen Steele
        Keymaster

        Thank you @kygon and @mrperry009 for sharing what has worked for you. I’m taking notes because both my husband and I struggle wit RA and well, just basic aches and pains from aging.

        A friend of ours has been making corn bags for Cullen since his PH days. You can freeze them or heat them in the microwave, which is what he usually does. It works wonders for migraines and muscle pains, and is just comforting on chilly nights.

      • #35605

        Hi Jen, the CBD brand we use is by Monarch Quality Tinctures Nano CBD Healing Lotion 1000 MG. I tried posting a photo of the bottle but it’s complicated to insert photos – p.s. thanks for liking my username 🙂

        • #35609
          Jen Cueva
          Keymaster

          Thanks for sharing that with us all, @mrperry009; maybe others will find it beneficial, too. I hear you often need trial and error to find one that works well with our body chemistry. Did you have to try a few before finding this brand helpful?

          How are y’all doing this week?

        • #35669

          Hi Jen,

          Apologies for the late reply… we just returned from a trip to the coast. We’re doing well & hope you are too. We’ve tried many brands of CBD, depending on where it is available. All have been effective but the 1000 mcg seems to work best for us. Hope you have a great week!

        • #35679
          Jen Cueva
          Keymaster

          Hi @mrperry009, never apologize for responding later. Plus, I love the coast, too, so that is always excusable, LOL.

          What areas were you and Susie visiting now?

          Thank you for sharing the dosage that you both found was most effective for y’all. I’ll look into this; maybe others will find it helpful, too.

        • #35681
          Colleen Steele
          Keymaster

          @mrperry009 happy belated birthday! I’m guessing the trip to the coast was where you celebrated it? I hope you and Susie had a wonderful time!

        • #35687
          Jen Cueva
          Keymaster

          Oh yeah, I believe Perry’s birthday with a day before or after my daughter KK’s last week. Thanks for that reminder, @colleensteele.

          Happy belated birthday to you, @mrperry009. I wish you all the best and many more, my PHriend.

    • #35571

      Thanks for raising this topic!  I, too, get frequent neck/shoulder pain and we’ve found that CBD lotion 1000 mg works best. Just a dab worked into the area before bed and I can now sleep through the night. We’ve purchased from several dispensaries in Calif. and they’ve all worked.  A little pricey, but worth it.

    • #35578
      Kathleen Grady
      Participant

      I take Tramadol for the leg and arm pain. I get tension knots in my shoulders and neck, and bought on Amazon a TENS machine. My chiropractor has a fancy one when I go in there and she recommended getting one for home use.  Best thing ever!

      I have tried all the creams and ointments and the TENS machine is the only thing that has worked when it is really tight.

      • #35584
        Colleen Steele
        Keymaster

        I’m often learning new things from all of you. I never heard of the TENS machine @kgrady69 but just looked it up. Thank you for sharing! Christmas will be here before we know it…lol.

    • #35660
      Debbie Moore
      Participant

      I have upper back across the shoulders and back of neck pain.  I thought it was from sleeping wrong.  But it is every morning I wake up it is there and lasts most of the day as a dull thud.  Y’all have given me something to think about.  The other pains I have are sharp, stabbing pains on my side or in my chest.  They only last for a few seconds, but leave me sore.  I take no medicine.

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