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Vee Mozzie

Pulmonary Arterial Hypertension PAH Pressures

6 posts in this topic

I have just registered on the forum and need help understanding my PAH pressures. I am 67 years old and was diagnosed with Systemic Scleroderma with CREST and Pulmonary Arterial Hypertension just over 3 years ago however I have had Raynaud’s Phenomenon and a very high titre ANA and anti centromere patterns since my early 30’s. Since diagnosis (just over 3 years ago) I have been under the care of a Rheumatologist as well as a Cardiologist and have been prescribed double treatment of Bosanten or Sitaxenten (until recalled last month) plus Sildenafil.

 

Regular Echocardiograms have been assessed by my Cardiologist, which showed elevated pulmonary pressures greater than 54 mmHg with dilated right heart structures. However, over the past 12 months, my PAH pressures, measured by Echocardiograms were found to be between 29 and 50 mmHg. As I have continuing ankle oedema and dyspnoea with walking up hills, late last year, my Rheumatologist referred me to St Vincents Hospital for a second opinion which involved tests including a right heart catheter, the only one I have had, this resulted in PAH pressure of 27 mmHg (which in effect, halved my previous pressures measured by Echocardiogram). Is it possible that Echocardiograms are less accurate for measuring these pressures, than Right Heart Catheter assessments or, could I be seeing some improvement in my pressures? :) I would appreciate your opinions, thank you.

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Hi Vee,

 

Welcome to the forum! I'm glad you joined and I hope you'll post often and let us get to know you.

 

Yes - yes right heart catheterization (RHC) is more accurate than echocardiogram (because it measures the pressure directly) and yes, I think you could be seeing some improvement. Mind you, I'm no doctor, but we've had members show improvement with pulmonary hypertension so I'd say that could be possible.

 

I know from experience that RHC can show a significantly different pressure than the echocardiogram (it also happened to me). An echo and bubble echo both showed moderate to severe PAH and I was sent for a RHC which dropped me into the mild category at that time (about 4 years ago this spring).

 

What are your doctors telling you?

 

Warm wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Vee

 

A warm welcome to these friendly and helpful forums!

 

I also have Limited Systemic Sclero and I had an Echocardiogram in June 2009 and am due to have another next month. Thankfully I don't actually have Pulmonary Arterial Hypertension so am unable to advise you from my own experience; however I hope that the results of your right heart catheterization (RHC) do mean that your pressures have improved, as Jeannie has suggested.

 

We have a couple of links HERE and HERE which I hope you will find interesting and informative.

 

I'm looking forward to reading your future posts and getting to know you. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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I sent an earlier reply, but it may have gotten lost in cyberspace. I it's found, there may be duplication.

 

I've had three RHC procedures for PH. My doctor indicated that this was the only way to get an accurate reading, and that the echo test was not reliable except to indicate that there might be a problem that required further testing.

 

My case is somewhat similar, having had some symptoms for a few decades, with complications coming later.

 

PH (like scleroderma!) is quite rare (my research says that a typical general practitioner or family practice physician may only see one case in a career), and (like scleroderma) is best handled by an expert, preferably an institution known for the field. It sounds like you are on the right track.

 

Good luck,

 

Craig

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Hello Vee

 

Welcome to the forums! I have post capillary pulmonary hypertension which means it's a result of the knock on effect of problems I have with the left side of my heart. Mind you now that I have my pacemaker/defibrillator I wonder if the improvement to the left side of my heart has alleviated my PH? Must ask when I see the cardiologist in February.

 

I do know that as already said the only way to accurately measure PH pressure is with the right heart catheter test.

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thank you Jeannie, hopefully it is improvement. I haven't yet had a post discharge consultation with the Doctor - my time in hospital came about immediately before we moved house, settling in the new one, and before we knew it, holiday was upon us. So I will be sure to seek his advice on this issue at my next appointment and will let you know.

 

Thank you to the other replies also, just knowing everyone is there, really makes a difference.

 

Regards, keep well Vee

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