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Molly G

I just started Tracleer, for pulmonary hypertension

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Hello Molly,

 

Welcome to the forums! I have no personal experience of Tracleer but can direct you to information we have on site about it, it's also known as Bosentan.

 

It seems to have various uses in systemic sclerosis, what are you taking/going to take it for?

 

Take care and keep posting.


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 Molly,

 

Just popping in to welcome you too.

 

I also don't have any experience of Tracleer. The medication I take for pulmonary hypertension is ambrisentan, also known as Letairis. Aside from continuous nasal congestion, I've had no side effects from it. I've been on it about 3-1/2 years and it seems to be working pretty well.

 

I hope to see you around the Forums.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Molly,

 

Welcome to these forums!

 

As the others have said, I also have no actual personal experience of Tracleer (bosentan) so I've included another link for you to give you some more information.

 

Do keep posting and let us get to know you.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I was diagnosed with scleroderma this summer, and have pulmonary hypertension. I started the Tracleer today. I wondered how others have tolerated it.

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Hello Molly,

 

My goodness you're a newbie, how are you finding making the transition from being well to not so much? I'm waiting to find out whether I'm heading towards a potential pulmonary hypertension diagnosis myself so who knows I may soon be asking the same question myself!

 

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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Howdy Molly,

 

I've been on Tracleer for a year. I haven't noticed any side effects yet, but do notice that if I don't take it the pain in my chest is worse...so hopefully it is working. :)

 

HUGS and keep us posted :)

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Hi Molly!

 

Adding my welcome as well! I haven't had any testing for that yet. Hope you are otherwise faring well!

 

Chopper


Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

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I've taken Tracleer (for PH) for a few years with no ill effects. It has potential for liver damage, which is why there is a required monthly liver blood test to make sure the liver isn't being hurt.

 

Craig

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Molly,

 

Welcome to the Sclero Forums! I'm sorry to hear that you were diagnosed with scleroderma and PH on the same day! But the good news with that is they probably caught the PH early with is definitely a good thing. I've been on Tracleer for almost 5 years. I was started at full dose of 125 mg - twice a day, but when my pulmonary artery pressure dropped enough (within 1.5 years of starting Tracleer), my dosage was reduced to 62.5 mg - twice a day. I have had no side effects that I know of other than a GOOD side effect - my Raynaud's isn't near as bad as it use to be! As Craig mentioned it is important to get your liver function checked monthly because it can cause liver damage. With that said - after 5 years on this medication my liver enzymes still show a very healthy liver.

 

There are some medications that you can not take with it, so be sure to have a good discussing with the pharmacist - not the doctor. I actually had to stop my rheumatologist from putting me on cyclosporine A because you can't take that with Tracleer. He was not aware of it, but looked it up and saw I was right. Also, if you take iron supplements, you shouldn't take iron within an hour of taking the Tracleer. Just a couple of things that I've learned while taking this med. I'm sure you'll do just fine with it. If you explore the abstracts at the links that Jo and Amanda provided you'll learn more about it. The good news is that it has been shown to be effective!!!

 

Let us know how you are doing. Again, welcome!


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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