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Those Who Have Ph Too...question


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#1 Maddy07

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Posted 17 October 2007 - 07:54 AM

In my reading and research, I keep coming across statements about prognisis that are pretty dismal. I'm not talking about old stats either.

In several placess and articles, I've read that those whose PH is secondary to systemic sclerosis, they have a "particularly bad prognosis."

I have been under the impression that with all of the drugs now available to treat PH that most people do really well in general. But I keep seeing quotes such as the above and mentioning how many are alive at 2, 3 and 5 years and the stats aren't pretty!

Anyone here with PH care to tell me how fabulous you're doing? I'm just startiing meds and have had bad trouble with fluid retention, but I'm hopeful we'll get it worked otu and I can BENEFIT from the medications. Until then...I'd love to hear from others who have been down this road before. The articles have really scared me!

Maddy
Maddy
38 yr old mommy to 2 boys
Raynaud's, CREST diagnosed '96
Pulmonary Hypertension diagnosed Oct '07
GERD, Inefficient Esophageal Motility diagnosed Jan '09

#2 Clementine

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Posted 17 October 2007 - 08:43 AM

Maddie,

It is often hard for me to remain positive sometimes too, when I read certain articles. I am a good sign though. Two years ago, I had PH and my number was 45. Now, it is down to 25 and I did it without a specific PH medication. I started on supplemental oxygen in March, 2005 and then on Cellcept in May, 2005. I do take a calcium channel blocker but I don't give that credit for lowering my pressure because I started taking it only a year ago. I have had a right heart catheter and a few ultrasounds to confirm that I don't have PH anymore. I hope this helps you feel better. You can get better!
Tangelo

#3 MicheleM

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Posted 17 October 2007 - 12:00 PM

Maddy, I read the same articles and wonder the same thing myself. I was diagnosed two years ago, my number being 38. The dr said it wasn't bad enough for medication or o2, but to exercise & enjoy life. However, about 6 weeks ago I started having issues and I'm guessing since I feel like the o2 isn't getting into the rest of my body I made an appt and will go next Wed. Hopefully I'll hear good news, but I too worry when I read. I think if we keep our stress levels as low as possible (yeah, right I know!) and not think the worst it will make a positive impact. Then, live for today and plan for tomorrow. I figure I could go outside tomorrow, cross a street & get hit by a truck!!! So I don't let any old disease get me down - too much to do tomorrow!!!! Hope I've made you smile! Michele
Soft hugs your way,

Michele

#4 aniwallar

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Posted 17 October 2007 - 02:08 PM

Hi Maddy:

I was also diagnose with PH about 5 months ago. My number was so small that I didn't need meds. It was something like 32.
Well, a month ago I had an echo to check on the PH and it came clear. Now, I don't know if that is the only test use to diagnose it but I was happy to hear that. I excersice a lot so maybe that helped.
Everytime I surfe the net for something that is worrying me, I end up even more worry and I drive myself crazy about my future and my children. I have a 13 and a 10 years old that I want to see grow up. You know what? It really is not worth to think too much about this because it is not too much we can do about it. We just go to the doctor, take tests and if something goes wrong, we take care of it.
I think everyone of this forum has become so strong that we keep on going even when we get bad news.
So, feel good knowing that there are a lot of us that are doing very good even
thought we were diagnosed with the same condition.


Ani

#5 Maddy07

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Posted 17 October 2007 - 04:03 PM

Just an fyi. My numbers on echo were 35. I do have shortness of breath (so I'm symptomatic) and the gold standard for diagnosing PH is a right heart catheterization.

My pulm and I both expected to hear I had mild ph since I only had 35 on echo. My number came back at 80!

PH isn't something I'd play around with....if your echo indicates possible or mild ph, any ph specialist would tell you to have a heart cath done so you can know once and for all.

Thanks for all of the replies. I agree and know that it is what it is. Worrying about it doesn't hep and I don't spend my day doing that necessarily, but when I keep coming across the same info, I just had to ask! :) Thanks again and I hope those of you that haven't had a cath will look into that. I do know the earlier you treat it, the better and hey...maybe it will rule it OUT! :)

Maddy
Maddy
38 yr old mommy to 2 boys
Raynaud's, CREST diagnosed '96
Pulmonary Hypertension diagnosed Oct '07
GERD, Inefficient Esophageal Motility diagnosed Jan '09

#6 janey

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Posted 17 October 2007 - 04:43 PM

Maddy,
Any diagnosis is very hard to hear, but almost every diagnosis has a better chance when found early. It does sound like your's was found early. I was "officially" diagnosed with PH when the ECHO came in at 45. My pulmonologist decided not to do the heart cath because the trend over 3 years was upward - from 18 to 45. I was immediately put on Tracleer (Bosentan) and the next ECHO 3 months later showed a decrease. Now a year later, my ECHO last month showed 25. The technician that did the ECHO said that she has seen people with PA pressure of over 150 before diagnosis, so I consider myself lucky. It's interesting how symptoms are different for different people. My SOB has definitely lessoned during the past year, so I feel confident about the decision to treat for PH.

Have you and your doctor talked about treatment yet? There are some meds out there that are starting to make the outlook for PH look a lot better. Many of these drugs also help to lesson the problems associated with Raynaud's so you can get a dual benefit. Please let us know what your next steps are. We're here for you.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
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International Scleroderma Network (ISN)

#7 Maddy07

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Posted 17 October 2007 - 05:32 PM

Janey,

I'm glad to hear you've done so well on Tracleer! I was put on Revatio (started that this weekend and can tell a difference but having fluid retention issues and we're trying to balance out right mix of Revatio and Lasix). I was also prescribed Tracleer but as you know, it takes time to get the first meds from the company. I've heard such great things about the Tracleer in particular and I look forward to starting it once it arrives.

Did you experience many of the side effects or have any problems on it? And how long before you could tell a difference?

Oh and the Revatio has made a difference not only in my shortness of breath (takes more activity to get sob than before), and I think the Raynaud's is better too. Gotta love that!
Maddy
38 yr old mommy to 2 boys
Raynaud's, CREST diagnosed '96
Pulmonary Hypertension diagnosed Oct '07
GERD, Inefficient Esophageal Motility diagnosed Jan '09