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Treatment for Pulmonary Hypertension


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#1 summer

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Posted 17 April 2008 - 02:11 PM

Hello everyone,

Could someone please tell me the usual treatment for PH?, and also whether this treatment has helped for you?.

Many thanks
Celia

#2 janey

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Posted 17 April 2008 - 04:35 PM

Celia,
Here is our link to the treatments for PH. I've been on Bosentan (tracleer) for 1.5 years. My PA pressure dropped from 45 yo 30 within 8 months at which time I went to half dose and have been there since without an increase in PA pressure. There have been several studies that show it's effectiveness. A great side effect is that it has also help decrease the severity of my Raynaud's episodes as well as the frequency of them. You do have to get monthly blood test because it can affect the liver; but - so far so good. My liver enzymes are perfectly normal.

Big Hugs,
Janey Willis
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#3 summer

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Posted 17 April 2008 - 09:07 PM

Thanks Janey, do you take it orally or by I.V? and do you suffer from any side effects?

Thanks
Celia

#4 janey

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Posted 18 April 2008 - 03:36 AM

Celia,
Bosentan is only given orally. I take 62.5 mg in the morning and another pill in the evening before bedtime. So far so good - no side effects. My last liver function test was 17 and 24 (ALT / AST respectively).

Big Hugs,
Janey Willis
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#5 LisaBulman

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Posted 18 April 2008 - 03:39 AM

Hi Celia,
I was in the trial for the effectiveness of Bosentan in ILD. I wasn't so lucky because it did effect my liver! It has been a long while now and my numbers are at "my normal" now about 120 and 80. If you don't get the side effects it is supposed to work great!

Hugs,
Lisa
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#6 peanut

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Posted 18 April 2008 - 05:50 AM

I take revatio & letairis for PH. They're both pills. revatio has a good side effect as it also helps with raynauds.

peanut

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

#7 Kaycee

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Posted 18 April 2008 - 09:53 AM

I'm intrested in this info as I am now taking Lisinopril but am having a heart catherization on April 30 to get a clearer picture of the exact pressure in my heart. Of course, I am scared to death about having this done even though I know it is a simple outpatient procedure. They have a hard time now finding a good vein for bloodwork and IV's so I can only imagine what a time they will have finding a good artery. :unsure:
Much love,

Kim


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#8 Sheryl

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Posted 18 April 2008 - 12:11 PM

Kaycee,
I wish you the best on your heart cath. Several people here have already been where you are going. Some of us will be in the future. This proceedure is so much better than years ago. It is still scarry though. Your friends here will keep you in our thoughts. Let us know when it is over, everything you remember. It might not be much, but it helps mentally prepare others for when it is their turn.
I am going in for a simple colonoscopy on Monday and I am worried more about the IV insertion than any thing else. The three pick law, and 3 nurses later drives me crazy. They all think they can get the job done on the next try. Best of wishes to you.
Strength and Warmth,
Sheryl

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#9 Snowbird

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Posted 18 April 2008 - 02:59 PM

Kaycee & Sheryl

Good luck with your tests, I know it's scary but I'm sure you'll both do better than you think! :)
Sending good wishes your way!

#10 CraigR

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Posted 19 April 2008 - 11:54 AM

I've had three right heart caths. No big deal. The worst part is when they inject the anesthetic to deaden the pain - just a bit of a sting, like novacaine at the dentist. Other than that you just lie there. You might be able to see the thread on the flouroscope.

Craig

#11 summer

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Posted 19 April 2008 - 01:10 PM

Craig, do you get any sedation at all?, how long approximately does the procedure last and how long recovery time?

Many thanks to all

Celia :)

#12 summer

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Posted 19 April 2008 - 01:19 PM

Sheryl, Good luck with your Colonoscopy, please let us know how you go.

I'm having a Gastroscopy Monday week, It's getting to the stage now with me that I nearly faint when I need to have blood taken and so forth.

Take care
Celia

#13 CraigR

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Posted 21 April 2008 - 08:11 AM

Celia,

The only anesthesia is local, so I was never sedated. No need. Afterward, they had me lie down for about an hour before they allowed me to get up and leave. I drove myself to the hospital and back, so no issues of sedation.

Craig

#14 summer

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Posted 21 April 2008 - 06:03 PM

Thanks for all of the replies, I saw my Cardiologist yesterday for a review.
I mentioned to him that I have now developed a dry scratchy cough for the last 5 weeks and SOB is always there on exertion and fatigue is constant. My Pft DLCO 12 months ago was above normal ranges but has since been declining.
My CT Chest shows no fibrosis of the lungs, but this still does not convince him that I may have PH. He has suggested that the cough I have may be a virus, the angina like pain I have may be reflux. I am scheduled to have a Gastroscopy next Monday to try and sort out reflux issues that I am having.

My Cardiologist will only consider a right heart catheter when all of my other symptoms have been accounted for by my various other doctors, and if my next PFT shows more declining numbers on the DLCO, he will then consider doing it.
He seems a very cautious doctor and does not want to do a right heart catheter unless there is a need to do so as there is certain risks and so forth.

So, my dilemma is should I wait and see what happens and trust this doctor, who is supposed to be the best in his field diagnosing PH, or, should I seek another opinion?. My rheumatologist has organised for me to have another PFT in the middle of May, I am now having them every 3 months.

Take care
Celia

#15 peanut

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Posted 22 April 2008 - 06:02 AM

Celia,
What does your gut tell you?
If you like your Cardio It might be good to wait and see. Getting pft's every 3 months makes me think you seem to be on top of things. Next time you see your Cardio express that you would like to be proactive about your condition and a RHC would be good to get some accurate baseline information.

I've had 2 RHCs. The first was thru the groin with sedation and the second was thru the neck without sedation. I don't like things happening around my neck, but it was nice to have a short recovery time. I was happily sedated and comfy with the groin and the recovery time is at least an hour.

peanut

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

#16 summer

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Posted 23 April 2008 - 01:25 PM

Hi Peanut,
After much thought, considering I am having PFT every 3 months, I will probably wait and see what my next PFT is before I make any rash decision.

Thank you for replying to my post Peanut I hope everything is ok with you, sending positive thoughts your way.

Take care
Celia