Jump to content


Congrats to Margaret, Platinum Member with 1,000 posts and 10 Years of Forums Membership!


Photo

PAH And High Heart Rate


  • Please log in to reply
6 replies to this topic

#1 tmgilbertpt

tmgilbertpt

    Bronze Member

  • Members
  • PipPip
  • 23 posts

Posted 08 November 2007 - 03:02 PM

Hello everyone,

I was wondering if anyone out there has started treatment for pulmonary artery hypertension and if so, what were your symptoms and do you know what your artery pressure was. I recently had a right heart catherization and my pressure was 30 mmHg. (PAH is defined anything above 25 mmHg). I have been having a high heart rate from 100-130 beats/min just with sitting down activites, chest pain and palpitations. Also shortness of breath. I did have interstitial lung disease which was successfully treated with IV cyclophosphamide. My pulmonary doctor agreed to start treatment for PAH, even though he felt 99% sure my symptoms were not due to the PAH. I have cut out all caffeine and chocolate. On meds for anxiety and practice meditation also for this. I am a physical therapist so I have an active job. A national conference emphasized the importance of treating PAH early to help prevent/delay deterioration. Any thoughts/personal symptoms would be helpful . Thanks, Tammy



#2 peanut

peanut

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 08 November 2007 - 05:34 PM

Hey Tammy,
It is very important to teat your PAH early as it will make your quality of life better and prolong your life. I am on a combination of Revatio & Letairis. I kept telling my lung doctor that I was short of breath and coughing. She said one of her partner doctors specializes in PH and as a preventative measure (she knows my philosophy is pro-active) it wouldn't hurt to be examined for PH. He listened to my heart and thought it was beating kind of fast, so he scheduled a right heart cath. At rest they found I was normal but my numbers shot up with exertion. I am now in pulmonary rehab and they tell me "exercise induced PH" is kind of typical with people who have pulmonary fibrosis/interstitial lung disease.

I immediately noticed positive results with the revatio, not so much with the letairis. My PH doctor says early research is showing letairis may help with PH and ILD.

Take care,
peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#3 tmgilbertpt

tmgilbertpt

    Bronze Member

  • Topic Starter
  • Members
  • PipPip
  • 23 posts

Posted 09 November 2007 - 07:23 AM

Thanks Peanut for the reply. I do have one question for you. So even though your right heart cath did not show PAH at rest but only with exercise, they thought it appropriate to start treatment? I guess I am just getting reassurance that I am not making too much out of this and that my persuading my doctor to start treatment is the correct thing? Thanks again

#4 peanut

peanut

    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 738 posts

Posted 09 November 2007 - 09:53 AM

Tammy,
Yup... they decided on treatment.
My case is classified as mild. My doctor is also a researcher. He and his team are two years out as far as PH is concerned. He felt that treating it early may slow its progression.

Most people with PH are diagnosed in moderate or severe states. Their treatments are much more intense and expensive. Personally, I'm not in any hurry to see this thing advance and am willing to do whatever it takes to prevent its progress.

But really it's really up to you.

hugs, peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#5 MicheleM

MicheleM

    Silver Member

  • Members
  • PipPipPipPip
  • 119 posts
  • Location:Atlanta, GA

Posted 10 November 2007 - 02:23 PM

Hi Guys. I was diagnosed with PAH at 34 pressure in 05 and was put on Viagra to reduce pressure until I could see the specialist at Emory. I got very, very sick and migraines with the viagra & stopped using - I was absolutely useless & in great pain. Dr. Fischer at Emory told me that I was right to discontinue the med and he wouldn't prescribe until pressures were 40/45 for longer than 6 months with the right heart cath. So I'm guessing there are many different viewpoints on this one! Be very careful with the meds. The headache was unreal and it is a listed side effect :( Don't know if I've helped, but this was my experience. Gonna get more info in a couple of weeks. Just had another echo, PFT & CT due to shortness of breath that's pretty consistent with activity. We'll see. Who knows ... maybe I'm healed?!?!?!!
Soft hugs your way,

Michele

#6 janey

janey

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 2,118 posts
  • Location:New Mexico

Posted 11 November 2007 - 06:23 AM

Tammy,
I was started on medication for PAH (Tracleer/Bosentan) when my PA pressure hit 45. It had shown an increase every 6 months for 3 years based on my ECHOs. The doctor that started me on Tracleer said I should have been put on Meds when it hit 35. (My first echo had a PA pressure of 18 so it was a definite trend upwards). I've no side effects from the Tracleer and my PA pressure has dropped to 25, she reduced my dosage to half dose. The last ECHO showed my PA pressure at 30, but she kept me on half dose.

Symptoms - serious drop in O2 sat when I walk (98% to high 70's / low 80's), SOB, very low endurance for exercise, coughing, coughing and more coughing. DLCO in the 45 to 50% range. Of course I also have mild pulmonary fibrosis, so some of the symptoms may be caused by that.

As far as a fast heart rate, I do have atrial fibs that my cardiac doctor thinks could be caused by the lungs problems. When in Afib my heart rate exceeds 150 but my pacemaker tries to regulate it at a lower rate. It's set for 70 to 150. My last pacer check showed I was in Afib 96% of the time. So Yes - I do have a fast heart rate. :lol:

I truly hopes the medication works for you. Do you know what you'll be taking?

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#7 Karenpi

Karenpi

    Newbie

  • Members
  • Pip
  • 8 posts

Posted 11 November 2007 - 11:47 AM

Hi...Thank you for the information on pulmonary hypertension. I see my pulmonary doctor in two weeks and I need to talk to him about my suspicion that I have this. It has come on quite quickly during the last 3 or so months. What are some of the "right" things to ask on this visit? I have had sclero for nine years with pulmonary fibrosis which seems to have been pretty much under control. I exercise (walk) but am finding it more and more difficult to walk steps without getting totally winded. My heart rate goes up upon exertion but my blood pressure is within the normal range at rest or with limited activity. I don't know if my pulmonary doctor specializes in PH. Any advice? Thanks, Karen