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Cayla Butcher

Pulmonary Hypertension Treatment

14 posts in this topic

My mum has pulmonary hypertension due to scleroderma; the doctors have said it's quite severe.

 

Does anyone know of anything that can be done?

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Hi Cayla,

 

I'm so sorry that your mother has been having such a lot of health worries and problems with Scleroderma.

 

I've included a link for Treatments for Pulmonary Hypertension which I hope will give you some more information. As advised on the other thread "Scleroderma blood tests and diagnosis" we do recommend that you consult a Scleroderma specialist as your mother does need to be dealt with by someone who is familiar with the idiosyncrasies of this unusual disease.

 

I do hope that your mother receives the treatment she needs and I'm sending you and her a warm :emoticons-group-hug: from all of us. (I'm the red one!)

 

Kind regards,


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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Cayla,

So sorry to hear that your mother has been diagnosed with severe PH. Hopefully she is under the care of a scleroderma specialist or a pulmonary doctor that is quite familiar with PH due to scleroderma. As Jo pointed out, there are many new treatments today that have been found successful. Please visit the link that Jo provided. I have PH associated with scleroderma and am taking Bosentan (Tracleer). It has helped me tremendously. I was reduced to half dosage a couple of years ago and my PH is stable and is actually greatly reduced.

Please let us know how your mother is doing and if you have additional questions.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Thanks again guys.

I am just worried because they said there was no reversing it, and due to the severity she is likely to live for only a year or two.

I hope they are wrong; it came on so suddenly we hadn't even really heard much about it until about a month ago.

I messaged Robyn Sim about a good sclero specialist in the Melbourne region; I'm a little impatient though :lol: , if anyone knows of any please pass it on.

Thanks.

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Hello Cayla

Have you looked on the Scleroderma Australia website? They may be able to help if you make contact with them. My dear friend was given rituximab for her issues including PH. As you can see there are treatments for PH, it can't be cured but it can be treated, obviously the success varies from person to person.

When I was first diagnosed a general practitioner told my sister scleroderma could not be treated...wrong...it can't be cured but it can be treated, I think people equate incurable with untreatable...not so!

Take care.


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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Hi Cayla,

 

I'm hopeful that the links/information Jo, janey and Amanda have made available for you will be of great help to you and your mum.

Your mum is fortunate to have you; May you and she move quickly forward with locating an excellent doctor who gets a treatment program in place that is of special benefit to your mum.

 

Keeping your mum and you close in thought.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi to Robyn and those of you on the Australian Forum,

 

I have had correspondence by PM with Cayla over the past few weeks and she has told me that her Mum died a week or two ago. I asked her if she minded me letting you all know and she said that's fine.

 

It is such a waste when a relatively young person succumbs to our disease particularly when others of us have, managed with good care, to soldier on.

 

Cayla has said that she and her sisters would like to do something to help the cause, but I suspect they need assistance.

 

Perhaps Sclero Aus. can be in touch with them by PM through this forum.

 

Thanks

 

JudyT

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Judyt, please let Cayla know we are all thinking about her and feel so badly that she and her mom didn't get anything near the year together that they had hoped. Maybe Cayla is reading this post or will be when her life settles down. Cayla stay on top of your own health .I am happy to hear that you started on cyclophosphamide treatment to help you with your Pulmonary Fibrosis. I hope it starts showing its effects on you soon. Better health is a good thing.


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hello Cayla

 

I am so sorry your mum has passed away, how wonderful that in response you and your sisters want to do something to benefit other people with scleroderma. Thank you so much.

 

Take care.


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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Hi Cayla,

 

I'm so sorry to learn from Judy that your mother has passed away.

 

It's wonderfully thoughtful of you and your sisters to want to help other people who are suffering from this bizarre disease.

 

I'm thinking of you and your family at this time.

 

My very best wishes,


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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Cayla, I too am very sorry to hear about the loss of your mother. You and your family are in my thoughts as well. Take care.


Sending good wishes your way!

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