peanut

Viagra & Tracleer

18 posts in this topic

Well had my right heart cath a few days ago and I thought everything went fine. Today I went to my doctor to review the findings and I have borderline PH with exercise induced PH all of which will be treated like I have mild pulmonary hypertension (PH). Next is seeing if my insurance will cover tracleer and viagra. There's also a new PH med about to come on to the market, just did in Canada. Doc says it does well specifically with PH/Scleroderma patients. Woo hoo...

 

Well if you take viagra or tracleer would you mind sharing your experiences?

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Peanut,
I was prescribed Tracleer (also called Bosentan) last fall (Oct I think) when my PA pressure reached 45 according an ECHO. I started at half dosage for a month, then went to full dose (125mg twice a day). My ECHO is March showed a PA pressure was between 25 to 31. WhooHoo!!! I was taken back to half dose. I've had my liver enzymes check monthly as required and they remain normal. My pulmonoloist talked about Viagra only if the Tracleer didn't work. No sense taking two meds when one can do the job. An added benefit is that it has helped with the Raynaud's. I get purple fingers, but I haven't seen white since I started taking the Tracleer.

Here's our link to Bosentan (Tracleer) for PH. It shows some studies on the positive effects of Tracleer for PH.

I'm sorry you were diagnosed with mild PH. Something like this is best treated when it is caught early. Koodos to your doctor for jumping on this and catching it early. I hope whichever treatment you decide, it works for you. Please let us know what you decide.

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)

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Hi, Peanut!

 

I take Cialis, which is about the same thing as Viagra. I actually took Viagra for awhile but my doctor switched me to Cialis because it lasts longer and therefore I can take half as much.

 

I am not takng it for pulmonary problems, though. I am taking it to get more circulation to my fingers. Prior to taking it, I had a bad ulcer that got gangrene and ate off part of my finger. About the time that began to heal (after about a year of suffering with it) I started to get another one on the opposite hand. Fortunately, by this time doctors had begun to use Viagra to help prevent these ulcers and I was started on Viagra. The new, beginning ulcer cleared right up and I haven't had a serious one since then. I thought it was like a miracle.

 

I hope it helps you as much as it did me!

 

Mary in Texas

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Hi there Peanut~

I am sorry to hear that you have borderline PH. As for the medictions, I think you will have to choose which one (or both) that really makes you feel better without all of the negative side effects.

 

At one point my rheumatologist and I discussed Viagra for Raynauds. I would still consider it if the Raynauds gets worse. I don't know much about the side effects, but she seemed to think that it was safe enough.

 

Please let us know how you do during this process.

 

Hugs &


*WestCoast*

 

********

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Hey Janey,

Being newly diagnosed my philosophy is run every test in the book! Correct me if I'm wrong, I've read that if something big is going to happen in the first 3-5 years. So, I'm going to be proactive till then. Also, we have pretty good insurance so I might as well take advantage of it.

 

Ideally, my doctor wants to put me on the new drug that should be on the market soon. I think I’ll be put on whatever my insurance accepts. I hope its Viagra since I’ve heard that Tracleer is expensive.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Peanut, I hate to tell you but Viagra and Cialis are outrageously expensive, too!, Some insurance companies will pay for it and others won't. I understand the FDA is looking at it and may approve it as a treatment for Scleroderma, but until they do, some insurance companies won't pay. Some people have had good luck changing the insurance company's mind by having their doctors go to bat for them.

 

As for side effects of Viagra and Cialis, I believe some people have had headaches in the beginning. I seem to remember one person solved this problem by breaking up the pill and taking bits of it all day -- or something like that! My doctor had me take one half a Viagra in the morning and one half at night and I never had a problem. When I switched to Cialis, I was put on one half a pill once a day. I haven't had a problem with that either.

 

Since I am taking it, I have done a lot of reading on Cialis (and Viagra) and it is apparently being found beneficial for a number of ailments, and headaches are the worst side effect I've heard of. There may be others, though. I just don't know, but I do know I'm glad I started taking it! I think it saved my fingers!

 

What's the name of the new drug you mentioned. I'd like to know more about it.

 

 

 

Mary in Texas

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Mary,

I was wrong - it think its called Thelin.


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Ooh, sorry to hear about this new development, peanut. Sounds like you really have a good doctor. I hope the new drug is available soon. I have nothing to add on the other drugs, but Janey seems to have had good luck with the Bosentan.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Peanut,

How did you find out that you had exercise induced PH? I am sorry to hear this! I hope that since you caught it now, you can get these meds and keep it under control.

xo

Jenniferhead

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Peanut,

I'm with you! I've entered year 5 since the symptoms started, but rounding out year 4 since diagnosis. So I, too, am getting everything tested and monitored. I've read the same thing about the 3 - 5 years so I'm hoping that things will start to calm down after this year. I'll know in January, that's always my worst month.

 

Yes, Tracleer is expensive for the insurance company (about $5000/month), but I only pay $10/month.

 

I'll see what kind of recent studies are out there on Thelin. We have a couple of publications on this site from 2004 that mention it as a possibility for PH, but nothing since then. I personally am very hesitant on new drugs, because I feel that the FDA approves them too soon. If it's been out there for at least 5 years, I'll feel pretty safe with it, but that's just me.

 

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)

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My doctor said Thelin or sitaxsentan has had success with specifically scleroderma related PH patients which is why my doctor is so excited about it. I read somewhere that it's been in Europe since Aug 2006.

 

They tested me for exercise induced PH during the right heart cath. I was laying chest up on the table. They gave me hand weights and told me to pump my arms kind of like doing flys. While I pumped the monitored the blood pressure in my lungs.

 

I look forward to these meds saving my fingers. I have a very sensitive finger right now. It makes typing a pain.

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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I have taken Tracleer for secondary PH. I've been off of it for a while due to some insurance problems, but I will be starting back up soon. I didn't have any side effects, and it seemed to help.

 

Regarding your fingers, there are some older, less expensive drugs that can be helpful. I've used Adalat (Nifedipine), a calcium channel blocker, as well as Prazosin (Mini-press). I found these helpful during a very bad bout with Raynauds. About 9 months after a stem cell transplant for lymphoma, Raynauds came on so bad that I had to bandage all my fingers. The two drugs mentioned above seemed to put it in remission.

 

Most any peripheral vasodilator will tend to reduce blood pressure. Your doctor may be hesitant to prescribe them for this reason. I use one of those automatic BP devices that you can get at any drug store to check to make sure it doesn't go too low.

 

Good Luck

 

Craig

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Hey Peanut,

 

Sorry to hear about this latest development for you. It is good that your doctor seems to be on top of things and familiar with scleroderma.

 

Is there a particular reason he had you do the hand weights during the heart cath? Were you having shortness of breath mostly during activity? Is this something that mmore doctors should be doing?

 

Good luck with your decisions...and insurance!

 

xoxo emmie

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Emmie,

 

Yes I am short of breath with activity, doing laundry and sometimes walking even 150 ft. I asked about oxygen and they said only if I were doing lots and lots of activity. I see my lung doctor monthly and she said there are limited treatment options all of which are being used. Hopefully those researchers will find something more.

 

Thanks everyone. I think I will be hearing back from my insurance and meds next week.

 

No more typing my fingers hurrrt!

 

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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