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: 3

    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: 3

    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

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