Blood pressure 2018-07-25T14:21:22+00:00

Home Forums General Discussion (Public Forum) Blood pressure

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  • Pepe
    Participant
    Post count: 1
    #8709 |

    Hello. I am a recent diagnosis. I am curious about blood pressure numbers the beginning of your diagnosis. Was it high? What was the actual BPH?

    Thanks!

  • linda
    Participant
    Post count: 5

    Pepe- My Pulmonary Pressure at the time of diagnosis was 50. That was almost 2 years ago, now my PH pressure is 54.

    • Judie Thatcher
      Participant
      Post count: 2

      I have to double check my right heart cath results but I believe it was 35. So far today I started doubling my Cialis to 40mg. Since starting at 20mg 2 weeks ago I have tons of energy and I am seeing moderate improvement with exercise tolerance. I am 60 and have exerted almost daily (exceptions of surgery recovery etc.) since I was 16. My tolerance for exercise took a nose dive around April. I was due for my yearly echo that I get bc of Ehlers Danlos which is an inherited connective disease disorder. The estimated PAH was elevated mildly around 25 which led me quickly to a right heart catheterization which confirmed the diagnosis. I see my pulmonologist in 3 weeks when we will add a second drug. I am not sure how it is determined what drugs to be used there seems to be a variety to choose from. Any insights into this would be appreciated.
      Also does everyone on here go to a PAH clinic in addition to their local treating Pulmonologist? I don’t want to miss a step in getting this under control. I also have RA and systemic mast cell disease which each requires my seeing a specialist. My mast cell doctor is at UF 2.5 hours away from my home. I don’t unnecessarily need to add any more doctors to my care. I don’t want to in any way not get the needed attention for my PAH. Amy advice will b3 appreciated.
      Judie

  • Joan Day
    Participant
    Post count: 1

    My pulmonary pressure was 40 on diagnosis last December. It is now 50 (June 18). Will it continue to rise that fast? I am 83.

  • Michelle
    Participant
    Post count: 9

    I am 57 with severe rheumatoid arthritis and now PAH. I am stage 4 with a blood pressure of 54 with my right heart cath. I am also on O2 24/7. I hope it doesn’t get worse

    • Judie Thatcher
      Participant
      Post count: 2

      Michelle. May I ask how long you have had RA? What treatment are you getting for RA?
      I have nene on xeljanz for 3.5 years.
      Judie

  • Michelle
    Participant
    Post count: 9

    Judie, I have had RA for 15 or more years. I was on remicaide infusion, now orencia injections, which I like more. I was on a few other meds but taken off due to PH. I also am on plaquenil and lycra. This whole situation is just a pain . I am now in severe flare due to PH meds. Going on prednisone in a few days
    Michelle Pestello

  • Mistylynn
    Participant
    Post count: 4

    Hi Pepe, I was already on ACE inhibitors which are a type of blood pressure med to protect my kidneys from Diabetes. Even being overweight, for the longest time my blood pressure was normal. It was normal on the ACE inhibitors before diagnosis. There’s a difference between blood pressure and the arterial pressure in your heart measured by heart caths and echocardiograms. My blood pressures taken by arm cuff were normal when my arterial pressure was around 70 on a heart cath.

  • joy
    Participant
    Post count: 2

    I have had high blood pressure for years. In February I was diagnosed as having mild pulmonary hypertension. For the past few months my blood pressure will go so low I can’t take my BP or heart medications. It goes as low as 89/40 without medication, it will stay like this for a week or so then shoot up to 160/100. My cardiologist says only take my meds when my BP shoots up. But this is not consistent. Does anyone else have problems like this?

  • lisa b
    Participant
    Post count: 1

    Hi all….this is all new to me and I’m not sure what to expect. I’m self pay for everything (and unable to work..ain’t that a kick in the pants). I had untreated high BP for many years, not knowing what it could lead to. About 6 1/2 years ago symptoms hit me like a ton of bricks for what I now know is PH. My BP is almost normal, however pulmonary pressure runs 68. I’ve just recently started any type of treatment and the only meds so far are lisinopril and amlodipine. I don’t experience much pain…..but boy life sucks when pulling up your pants is more than a workout for the day!! 🙁
    thanks

    • Michelle
      Participant
      Post count: 9

      Hi lisa, please go to the PAH clinic. I also see a lot of doctors, but this is important. Then see if you would go in the future. Yes, its expensive however this is your life now. Hope this helps some. I don’t have access to a clinic near me, but would love one. Michelle

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