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Mayo Clinic Wonder Pill For Pph?


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#1 mymomhasslero&pph

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Posted 11 November 2006 - 03:09 PM

Hello,
My mom has systemic scleroderma and PPH. She was officially diagnosed 3 years ago but has been showing signs for 15-20 years. The scleroderma has severely effected her hands, with painful calcinousis which are coming through her skin. Her feet and ankles are a purple color and she is constantly battleing ulcers on her feet. Her heart and lungs have developed a hard crust around them and she is on O2 24-7. Her current rheumotologist has never had a case of scleroderma and has been treating her symptoms as they have arrised. She is however seeing a very well known cardiologist (Dr. Rich) at the University of Chicago. She has been having a horrible time breathing for several months, can make it about 10 feet before becoming out of breath. She recently had a heart cath to test pressure levels. We where told that the sclero has become progressivley worse. His ownly treatment option that seemed to work for her was the Flolan Pump. She was to have that inserted this past week but cancelled due to the opportunity to be seen at the Mayo clinic the week after Thanksgiving.
Her father is seen at Mayo by a pulmonlogist who suggested a "New" treatment option "might" exist for her that is replacing Flolan in the form of a pill.
Has ANYONE heard of this???
She, unfortunatey for my brother and I, has not been very aggressive or honest with us about this disease or about finding out answers. She has not personally spoke to anyone up there to see if this pill exists. And, currently does not even have an appointment with a cardiologist.
Have you heard of anything?
She is currently back in the hospital with congestive heart failure due to fluid accumulating around her lungs and heart (the second time in the last 5 weeks). We are very worried that she is putting off much needed treatment for some pill that may or may not exist or may not even be an option for her.
Any information you can provided would be very helpful.
Thanks!!!

#2 janey

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Posted 11 November 2006 - 03:48 PM

Hey Darling,

Welcome to the forum! I'm very glad that you have found us because it sounds like you and your mother need lots of help. I'm sorry your mother is suffering so with this disease and has put off seeing a specialist for so long. I'm thrilled that she is FINALLY seeing one.

There are several new "pills" or treatments for scleroderma lung problems. Please click on this link and read about some of the studies and successes. Believe it or not, but Viagra has been proven to be one of those successes and that may well be the pill that the doctors are referring to. Please read about all these options before meeting with the specialist. That way you'll understand more about what he's talking about. I recently developed lung problems and knowing about my options and the various treatments made the communication between me and the doctor so much better. I was put on Bosentan. I can't say that I've seen results yet, but it's only been a month.

Please keep us informed on your mother's progress and visits. Hopefully, now that she's seeing a specialist, she'll start getting the disease treated as well as the symptoms and things will start slowing down and possibly even improve.

Big Hugs to you all,


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

#3 janey

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Posted 12 November 2006 - 05:25 PM

Hey Darling,
I have a question for you - you say in your posting that your mother has scleroderma and PPH (primary pulmonary hypertension). Who said that her PH was primary, meaning independent of the scleroderma and not caused by it?

Pulmonary hypertension is a common complication of scleroderma and when caused by the sclero is considered secondary PH. "The distinction is important because treatments, and their effectiveness, can vary depending upon whether the pulmonary hypertension is primary or secondary." As I mentioned in my previous post, I'm taking Bosentan (a little pill) which is used for certain types of secondary PH (class III and IV as defined by the NY Heart Association).

You mentioned that your mother is currently in the hospital. Is she being treated by a pulmonologist? You might ask if there is a pulmonary doctor that is familiar with scleroderma lung disease. He might be able to help you in getting immediate and effective treatment immediately. I certainly wouldn't depend on her current rheumatologist for making the right decisions. So please ask!

How is your mother doing today? Any improvement? Please keep us informed. Our hearts and thoughts go out to you, your mother and your family.

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)

#4 Shelley Ensz

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Posted 13 November 2006 - 10:58 AM

I'm very sorry to hear of your mother's condition and that she is in the hospital now. This must be very hard on everyone.

If you can talk to her medical team, ask what all of her treatment options might be for pulmonary hypertension. We have information readily available on the main website for PH secondary to scleroderma, so it's not like a secret that would only be available at Mayo Clinic and there might be something that she would be able to start on now.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Heidi

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Posted 13 November 2006 - 11:05 AM

Hi,

Welcome to the forums. I am glad you have found us but so sorry it is because of your mother's health. It looks like Janey gave you some great links to the information we have on our website about PAH. I hope you get the chance to read the information and talk with your mother's pulmonologist as Shelley suggested. Please do keep us posted on what you learn.

Warm wishes,
Heidi