The Revatio is killing me!!!

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N

njean

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Jul 19, 2007
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I just called my cardiologist because I believe that the new med (revatio) that he wants me to take for my high PH is killing me. I have had a nose bleed since 10:30 pm last night. My pillow sheets, blankets, floor, are bloodied; our bedroom looks like a crime scene! :eek: I've had maybe 2-1/2 hrs. of sleep total!

I've also had pressure headaches almost every day since I started taking the med & on & off nose bleeds but the nose bleed I'm having now, beats it all!

My cardio told me to get off it immediately & go to the ER if the nose bleed doesn't stop. Luckily, I guess that scared me enough that it appears to be clotting right now & not flowing like it was before.

I don't know what's going to happen now since this med isn't for me. I'll have to see what my doctor says next week when I have to see him for my appt.
 
Thanks Bina & Nancy. The bleed has stopped; trying to avoid bending down or doing much activity for fear that it starts up again.

Nancy ---- thank you for the websites. I went into the first one, & one of those medications costs $48,000 per year!!! :eek: And I was having a hard time getting my insurance co to pay $1300 a month!

I will check out all the others too & download the information & take it with me to the doctor next week.

Thanks again!
 
Norma - what is your INR? Did the Revatio jack it up, is that why you're bleeding? This sounds horrible - I hope you feel better soon!
 
"Taking vitamin K antagonists (like coumadin or warfarin) with REVATIO may increase risk of nosebleeds. Tell your doctor if you take such medicines."

This is from the Revatio website ...
With atleast three months off work I'll Google anything !!

Good luck with the nose ... You've tried pinching, head back, lumps of ice etc ect ??
 
Karlynn said:
Norma - what is your INR? Did the Revatio jack it up, is that why you're bleeding? This sounds horrible - I hope you feel better soon!
Click to expand...

I checked my INR on Monday & it was at 3.1. so I don't think that's the reason. Since I home test, I may just check it again tonight or tomorrow to see where it's at.

Thanks for your concern! :)
 
Woodbutcher said:
"Taking vitamin K antagonists (like coumadin or warfarin) with REVATIO may increase risk of nosebleeds. Tell your doctor if you take such medicines."

This is from the Revatio website ...
With atleast three months off work I'll Google anything !!

Good luck with the nose ... You've tried pinching, head back, lumps of ice etc ect ??
Click to expand...

I tried all those methods last night & nothing was working. I've been on coumadin for 30+ years so I'm pretty careful when a new med gets added to my regime & my cardio is too.

Thanks!
 
Sorry to hear about your problem. As you know I've been on Revatio for over 2 months now. I had the headaches also but no nose bleeds. I'm also on coumadin. If it's any importance the headaches do go away. I get them about once a week now, instead of all day. Revatio isn't cheap either my pharmacy charges 1200 for a 30 pills. so about 3600 amonth for me. Luckily my insurance is covering. What I don't understand is if it's marketed as viagra, It's covered under the 4 dollar pharmacy plan. Go figure.
 
Yes, the medications are frightfully expensive. Joe's doctor had to write a sort of grant to get him on Tracleer. It was about 100.00 per pill, and that was several years ago. When the pharmacy would ship the pills out, they used Fedex and Fedex always delivered it to the wrong house. Those boxes were worth more than their weight in gold. I always had to hunt them down.

We even had to bring his Tracleer to the hospital since their pharmacy didn't stock it then. I think most do now.

I seem to remember Joe having terrific headaches when he first went on Tracleer. It did go away after a few months. He also got some kind of rash, that too went away. But after a few years on it, he developed liver impairment and had to go off it.

I don't think Revatio has the liver impairment problem that the others do, which is probably why they tried you on it first.

Maybe they will cut back on your dose and see what happens.
 
geckley said:
Sorry to hear about your problem. As you know I've been on Revatio for over 2 months now. I had the headaches also but no nose bleeds. I'm also on coumadin. If it's any importance the headaches do go away. I get them about once a week now, instead of all day. Revatio isn't cheap either my pharmacy charges 1200 for a 30 pills. so about 3600 amonth for me. Luckily my insurance is covering. What I don't understand is if it's marketed as viagra, It's covered under the 4 dollar pharmacy plan. Go figure.
Click to expand...
Does it come in the same dose sizes at Viagra? Is it just the same exact drug under a different name?
 
Well, the nose bleed has stopped & I've been discussing the situation with my husband & I've decided that I am going to cut back it back to 40mg per day instead of the 60mg that I've been on.

1.) I don't always get the headaches after taking it & the air has been very dry here especially since I've been burning wood in our wood burning heater almost every night this past week. So perhaps that has promoted the nose bleeds too. And, I've always had small nose bleeds on & off even before I was on the revatio but never did they last this long.

2.) After reading the side affects of some of the other meds used to treat PH, such as Tracleer, that Nancy's Joe was taking, they tend to damage the liver after prolonged use & God knows, I don't need anything else going wrong w/my body.

3.) I know that I have to take something for the PH because my heart is already enlarged enough due to the stress of my mal-functioning mitral valve which the doctors don't want to touch unless I'm near death, so I have no choice if I want to live, & I want to live as long as I can.

4.) I have my appt with my cardio on Tuesday, so if I cut back as of today, I should be able to tell by then how my body is reacting to that dose.

Thanks again all for your advice, thoughts & concern! :)
 
I think you are making a wise choice. Perhaps after a while the side effects will dissipate and then you will be able to safely ramp up to where they want you dosage-wise.

I can tell you that when Joe was started on Tracleer, he was started on a very low dose and gradually increased, but he had side effects anyway.

Liver damage is not a good thing, and was one of the factors in Joe's passing. But there was no choice in drugs when he started on Tracleer, and if he didn't have that the PH would surely have taken him. And when he stopped Tracleer, there was no choice there either.

So, I hope you will be able to tolerate Revatio.
 
I don't know why they can't give it out as viagra. Viagra comes in like 5 different doses. I even had to get the doctor to call the insurance company to verify the prescription was legit because of its other use.
 
Hi Norma ~

I hope that cutting back on the medicine is working and that you haven't had any more nosebleeds since i talked with you, and that you're feeling better. It's too bad that medicine fixes one problem, but causes other health problems. I pray that your cardio is able to help you when you see him this week.

Best wishes,

Dawn-Marie
 
How scary, I hope you don't get any more nose bleeds and the cardio can adjust meds. If your heart is already enlarged from the mitral, what's the next step?
 
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