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#1 summer

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Posted 26 March 2007 - 08:50 PM

Hi Everyone,
I've just received some bad news about my ECHO which I thought was normal.
I spoke to my rheumatologist today (the one I don't see anymore) about an ECHO which I had done that she referred me to have a few weeks ago. She said that I probably have Pulmonary Hypertension and the pressure was 50. She has faxed through a referral to a local Hospital to have a repeat ECHO ( a more thorough one) for this Thursday.
My question is this:
Does anyone know what the normal pressure should be? ( I should of asked the rheumatologist when I spoke to her but I was in shock)

What are the treatments for PH? ( I have looked at the Sclero website but am a little confused)

Is this a bad sign that I have PH at this early stage of Limited/Crest?

Any other information about PH would be greatly appreciated and any experiences that any of you have had would also be of value.
My rheumatologist who I spoke to about this mentioned it was imperative that I get this second ECHO and vital that I follow it up with my current rheumatologist.

I am totally blown away with this result as the person that performed this Echo in the first place told me everything was normal.

Thanking you in advance
Celia :(

#2 nan

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Posted 27 March 2007 - 02:52 AM

Celia,
All I know is that my last visit with my rheumatologist he said that people with Limited/CREST can have pulmonary hypertension. He said that the good thing about it is they know have drugs that can treat it. He said something about the medicine being in tablet form , rather than IV.
Take Care,
Nan

#3 Heidi

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Posted 27 March 2007 - 03:42 AM

Hi Celia,

I am sorry about this bit of bad news! It does seem very odd that the technician who did your Echo said everything looked normal and now your rheumatologist is saying it looks like PH. I am glad she is sending you for a second opinion/second Echo. It sounds as if that is what is needed. here is a link to a previous discussion on a separate thread about diagnosing PH using an Echo vs. a Heart Catheter.
From the information there, it looks like the best method of accurately diagnosing PH is the heart catheter.

Please do keep us posted on what your new rheumatologist says and what the second Echo shows. You are in my thoughts.

Warm wishes,
Heidi

#4 Sweet

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Posted 27 March 2007 - 04:35 AM

Hi Celia,

Oh I am so sorry to hear about this possible diagnosis. It does seem out of the ordinary that you may have PH at the onset of CREST, but then again this disease is very unpredictable. If it were more predictable, perhaps they would have found a cure already... Try not to fret too much already. I do know there are several different treatments for PH that I am confident you doctor can prescribe for you IF you have PH, that will help keep it at bay.

Try to keep a positive attitude. I'm going to provide you with a link for Pulmonary Hypertension. it discusses what it is and what treatments are available.

My thoughts are with you, please let us know the outcome.


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 janey

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Posted 27 March 2007 - 04:45 AM

Celia,
Sorry your day started off with some not so good news. I'm not surprised at what the technician said. They are instructed to keep the patient in the dark so to speak. I never can get them to tell me my PA pressure so now I ask "is it greater than or less than ##?" I always get a response with that one. In the following articles, Determinants of Pulmonary Arterial Hypertension in Scleroderma, it states that PAH is diagnosed when the PA pressure is greater than 40. However, if you read through the articles on PH supplied by the Pulmonary Hypertension Association you find, as Heidi mentioned that diagnosis through an ECHO can be misleading. There are so many variables (equipment, technician, interpretation) that it can be any where from right on the money to as much as 30 - 50% off. The most accurate measurement is with the right heart catheter.

My PA via an ECHO was 45 at one time so the pulmonary doctor started me on Bosentan. My last ECHO showed it was in the range of 25 to 31, so on my next visit I'm going to talk to her about coming off the Bosentan or at least give me a heart catheter to get an accurate reading.

As far as treatments, there is Bosentan (Tracleer), Viagra (sildenafil), Illoprost and others. The main function of these drugs is to relax the arteries to allow improve blood flow and thus lower pressure.

If PH is suspected, I would highly recommend that you get a referral to a pulmonary doctor rather than letting your rheumatologist treat you. Please let us know what goes on with this - testing, doctor appointments, etc.

In the meantime - lots and lot of 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)

#6 summer

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Posted 28 March 2007 - 01:34 AM

Thank you all so much for responding to my post I know that I can count on you all for support when I most need it, this is such a great site!

Janey I do have a quesion for you, you mentioned that you had an ECHO which diagnosed your PA as 45. If the ECHO was wrong with your pressure and say it was within normal limits and your Dr prescribed you meds for it , can it do you any harm taking the meds if every thing is normal?

I'm hoping you know what I mean.

KInd regards
Celia ;)

#7 janey

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Posted 28 March 2007 - 03:31 AM

Celia,
It depends on the meds. Bosentan can cause liver damage so I have to get my liver enzymes checked regularly. As far as "will it make the PH worse" - I can't imagine that it would, but I'm certainly no doctor. As I mentioned, it did appear to bring down my PA pressure and it certainly helped my Raynaud's this winter! My fingers turned purple every once in a while, but they never turned white like last winter. The main thing with any meds is to be aware of how you feel and if you start feeling worse, call the doctor!

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)

#8 Vee

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Posted 28 March 2007 - 04:34 AM

Hi Celia,

I just had a rt. heart cath done, because they said my echo was a little on the high side. I've been told that it is ideal to stay below 40. I am also delighted to see that they are referring you to have another echo done before sending you on to have a heart cath. My heart cath came back as normal, which was good news, but it made me wonder why I was having such an invasive procedure done if I didn't need it. The tech there, told me that it could have been something as simple as the echo tech holding the doppler at the wrong angle!!!! I wish I would have known that before my cath was done, because I woiuld have insisted on having another echo first! Make sure you insist on an experienced tech.

Good luck!
Happy people don't have the best of everything, they just make the best of everything they have!

Warm and Happy to you! Vee

#9 Clementine

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Posted 28 March 2007 - 04:39 AM

GOOD LUCK Celia!!!! I will be thinking of you and I hope you get some good care and answers soon.
Jennifer