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    • #24536
      Dawn
      Participant

      Hello! Anyone have issues with their medication changing their sense of smell and/or taste? Ive taken ambrisentan and adcirca for almost two years. Shortly after starting the meds I noticed that things didn’t smell or taste the way they used to. I thought it might get better over time, but it hasn’t. Since I’m getting good results with my ph using these medications I’m not going to ask to have them changed. Just wanted to see if it’s a common thing with anyone else.

    • #24544
      Jen Cueva
      Moderator

      @dawnt, I agree with @ksmith610, the congestion could cause the change in the sense of smell. Sadly, congestion is a side effect of most PH medications. Some of us notice that the side effects aren’t as bad once our bodies adjust to them. This can be different for everyone. Are you having a lot of nasal congestion?

      Like you, seeing positive results from the medications, I would not stop them because of this. For me, I have certainly had a change in taste buds related to the medicines for PH. So, this could be a result.

      If this is new, I would be sure to let your medical team know.

    • #24547
      Dawn
      Participant

      Kevin, I’ve been lucky so far as to medications really giving me any issues. I have a couple non ph medications that I can’t take, but this isn’t enough for me to make a change in medication for the ph. I can imagine it was pretty frustrating to be treated for ph and then have the medication make things worse! I hope they got things sorted out for you.

      Jen, This isn’t something new so I’m not worried about it. I’ve had sinus issues most of my adult life, so I’m used to that and having decreased sense of smell but not to this extent. Actually, helping at the farm with the horses, having less sense of smell isn’t a bad thing when it comes to cleaning stalls! The change in taste frustrates me when I get really hungry for something that I like a lot and then it doesn’t taste like anything. I’ve never been the best cook, let alone try to make things taste good when I can’t taste! Still not giving up the medication though, it’s not even a consideration since I’ve had good changes with the medications.

    • #24551
      Jen Cueva
      Moderator

      @dawnt, thankfully, you had not had many issues with medications. I was worried if the taste and decrease in smell were new to you, as some said this could be an issue with COVID-19. I am happy, for that purpose, that it is not something new.

      LOL- I bet that the decrease in the smell does help around the farm.

      The taste issue is typical for me. I have to have my hubby taste things as I often feel like they are tasteless and need more seasoning. I agree with you. I certainly am not stopping the PH medications. I will deal with the taste issue. I have for years, so nothing new for me.

    • #24556
      Nancy McSweeney
      Participant

      Hi Dawn – I have used both those medications for 3 years and still have a keen sense of smell and no problems with taste. I have recently started taking Uptravi and that causes my shin and thigh bones to ache. Anyone else using Uptravi?

    • #24563
      Jen Cueva
      Moderator

      Hi @nancy-mcsweeney, I am on Uptravi. What dosage are you on now? You said that you just started it. How long have you been on it?

      I certainly do experience leg and body aches and pains from my Uptravi. I’ve been on it since right after it was FDA approved. I believe that was early 2016. I take Ultram(tramadol) as needed. I also was already on Neurontin(gabapentin) throughout the day. Are you on anything to help as needed? If it continues, sadly, mine did. Although it was worse when I would increase, I would ask your doctor for something to keep on hand.

    • #24565
      Nancy McSweeney
      Participant

      Hi Jen – I have been on Uptravi for a month now. Am currently up to 1000 mg twice a day. Thanks for the info.

    • #24567
      Jen Cueva
      Moderator

      Certainly, @nancy-mcsweeney, keep us posted on your progress as you increase your Uptravi. Did you doctor say what your goal dosage is?

      Let me know if you have any other questions about Uptravi.

    • #24575
      Brittany Foster
      Keymaster

      Hi @nancy-mcsweeney I know that titration on any medications can be difficult and can be an adjustment. I am currently adjusting to TPN (nutrition through IV) and at first there seems to be some water weight and rapid weight gain. Although I need the weight gain, it is something that I hope will steady out in a week or 2 and be less rapid to avoid the extra stress put on my heart if that happens. I know that starting medications can feel similar because you are trying to figure out what side effects and symptoms are normal and what ones are more concerning. How are you doing with the side effects from it? Are you being slowly adjusted?

    • #24585
      Nancy McSweeney
      Participant

      Hi Brittany – yes I am slowly adjusting to Uptravi. I still have aches, but not for as long a period after taking the medication; at least it now does not keep me awake at night.

    • #24595
      Jen Cueva
      Moderator

      Hi @nancy-mcsweeney, has your titration on Uptravi been slower due to COVID-19, and you are unable to follow up with your PH doctor? Do you do email or telephone updates so that they know when you should increase again? Or do you just follow a schedule that was already in place?

      It certainly can take some time for our bodies to adjust. As I remind everyone, if the symptoms are too bothersome, it may be a good idea to ask your PH doctor if you can hold off an extra week. This is just something to keep in mind.

    • #24598
      Nancy McSweeney
      Participant

      Thanks for your input. Yes, nurse calls me weekly before authorizing dose increase. The main problem due to COVID-19 is that wearing a face mask and portable oxygen with glasses – the glasses fog up. I really haven’t gone out all that much – just to the laundry room here at the condo complex and to take the trash out to the dumpster. Am having groceries delivered.

    • #24606
      Colleen Steele
      Keymaster

      @nancy-mcsweeney my son also wears glasses and when wearing a mask at work, they fog up on him to. I read a post on Facebook that suggested polishing glasses with a dab of shaving cream helps prevent the fogging. I just googled it and I am finding pages that do suggest this.

      Once says, “If you don’t have any anti-fog sprays/wipes in the house, try using a tiny dab of shaving foam to polish your lenses with. Let it dry before buffering off the excess and this should create a clear layer over your glasses to protect from the changes of heat and cold. Some people have reported that shaving foam works much better than anti-fog products and actually lasts longer.”

      I was going to suggest this to my son too. I worry about giving advice that I haven’t personally tried and then something going wrong. If you have an old pair of glasses, maybe try it on them first to make sure it doesn’t damage any special coating you might have on them.

    • #24611
      Jen Cueva
      Moderator

      Yes, @nancy-mcsweeney, I can see that. I wear glasses sometimes and have those issues fogging up, too. I also tend to breathe heavy already and often fog up my Jeep windows when I get in. Does anyone else do that?

      I am so happy that your nurse is calling you weekly to check-in and see how your titration is going.

      • #24613
        Nancy McSweeney
        Participant

        Hi Colleen – I will try shaving cream on my glasses. So far, I have just taken my glasses off since I have to use the oxygen and wear the mask when going outside and pray that I can see OK going down and upstairs to laundry room or trash dumpster. Not the best solution, but can see better that way than with foggy glasses.

    • #24612
      Dawn
      Participant

      Hi @nancy-mcsweeney, I hope your joint soreness eases up quickly. I chuckled when I read about your glasses fogging up with a face mask! I have that same issue, and from everyone’s replies here I see it’s common.

    • #24614
      Brittany Foster
      Keymaster

      @colleensteele I haven’t heard that about the glasses. I feel like I have a sensitivity issue to feeling things on my face. Masks are one of them and really are hard for me to keep on and wear. I have been trying to avoid direct contact or close contact with people but sometimes it’s not possible. I wear a mask when I go out and if I go out in a public place but it’s just too much “stuff” on my face at once. You have the oxygen, the mask to worry about, glasses, all the equipment can feel overwhelming. Anyone else ever get overwhelmed by equipment and medical equipment?

    • #24618
      Brittany Foster
      Keymaster

      @nancy-mcsweeney I am really glad that your nurses seem to be on top of all of this. Does your nurse come to your house too or do they just do check ins and updates over the phone or telehealth?

    • #24621
      Nancy McSweeney
      Participant

      The nurse came to my condo for the first visit; now because of stay-at-home restrictions it is by phone.

    • #24625
      Jen Cueva
      Moderator

      Hi @nancy-mcsweeney, please be careful going up and down the stairs. Let’s know if the shaving cream works. That was quite an interesting tip that @colleensteele shared.

      Yes, I’m sure that the hind nurse would come at least a few more times during your titration of Uotravi. Yes, the stay at home orders has caused many home health visits to be over the phone.

      I’m hoping that you have found some relief with the pain.

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