10 posts in this topic

Has anyone used Revatio for PAH and if so did you experience side effects? I am having headaches and sleepiness which are counterproductive to say the least. Did the side effects decrease with time?

 

Thanks,

Lynne

CREST with PAH

Share this post


Link to post
Share on other sites

Hi Lynne,

 

Have you checked out our page on Sildenafil (Revatio/Viagra)?

 

Headaches seem to be the second most common side effect of sildenafil, but usually go away with time. It might be worth checking with your doctor, though, since headaches can be symptomatic of so many other things.

 

Best wishes,


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

Share this post


Link to post
Share on other sites

Thank you, yes I have checked out the page many times. What I am looking for is people's experiences whether the side effects decrease? Your words are encouraging.

 

My doctor keeps repeating if the treatment works. At the time, I was too numb to ask exactly what that means. I won't see him for another 2 and a half weeks. So partly I am wondering what experiences folks have with revatio.

 

Thanks

Share this post


Link to post
Share on other sites

Hi Lynne,

While I was taking viagra I experienced the same thing. My dr suggested that I cut my pills and take them through out the day. I have since switched to cialis amd I experienced the same headache and exhaustion. I started to cut my pills and it makes a huge difference.

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hello Lynne,

I got headaches when I first started taking revatio, but I don't know about sleepiness because I take other meds that cause me to be tired sometimes. I take 1 pill 3 times a day.

 

Christy


Love makes the world go around!

Share this post


Link to post
Share on other sites

I take Revatio three times a day, 20 mg each time. At first the headaches were horrible, now I don't get them at all. I think it took about three weeks maybe for them to stop. Otherwise I love it. It saved my fingers this winter!

 

Karen

Share this post


Link to post
Share on other sites

I have just started taking sildenafil (after trying tadalafil with very bad side effects) and I am experiencing similar side effects - headaches, sleepiness, blocked nose, red face and sweating down my back also diarrhea. I am only taking one 20mg tablet a day but trying to move up to three tablets. At the moment I am trying taking the dose at bedtime, but my quality of sleep is not as good.

 

I am on holiday (just at home but not at work) and finding it difficult so I am wondering if I'll be able to cope at work. On the plus side my worst hand is improving and I have three ulcers which are starting to heal and better dexterity.

 

Can anyone tell me if the side effects do wear off? How long does this take? Just wondering if I should persevere; feeling pretty ropey at the moment.

 

Thanks

Tina

Share this post


Link to post
Share on other sites

Hi Tina,

 

I've never taken that particular medication, so can't advise you from my own experience. However, Jeannie has included a link to our medical pages on Sildenafil (Revatio/Viagra) in her post (2nd reply on this thread) which will give you more information on the drug.

 

It does sound as if the side effects may perhaps lessen a little with time, but if they persist, it's worth going back to your doctor to see if the dosage might need a little fine tuning.

 

I do hope that you feel much better soon.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Tina,

 

I'm sorry you are having side effects from sildenafil.

 

I think the best thing to do is to report all of your side effects to your doctor, and ask them what you can expect. Also read the drug info on sildenafil closely so you know what all the serious side effects are. "Serious" side effects are those that mean you are supposed to stop taking the medication and contact your doctor right away.

 

With many medications, the side effects can settle down over time but some side effects may always persist. Then the question becomes whether the side effects are worse than the problem being treated, or not. Also, many side effects can be treated, such as taking something for the headache. The potential benefit of saving your fingers from eventual amputation is pretty large so hopefully your side effects will begin dwindling soon.

 

I'm sending some extra warm hugs your way. Let us know what you find out from your doctor, okay?

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

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.

Share this post


Link to post
Share on other sites

What dose are you taking?

I've been taking 20mg three times a day since the start of the new year (6-7 weeks).

Right away I had more energy - I use my oxygen less - and my sharp pain and sores on my fingers improved. And I've had some side-effects. But I think I'm learning how to take it better.

First it aggravated my stomach bleeds. It took about 2-3 weeks for that to recover. It still isn't normal but I can tell my haemoglobin (Hb) is back up.

My blood pressure drops with it so I don't take it first thing out of bed or after or before I'm resting. I take it before I eat but after I've had my tea and I am moving about.

Earlier I had some wicked headaches but I think I'm learning how to avoid them. I watch my blood pressure. I'm on less than 1500 mg per day sodium diet, but if my pressure is low I'll indulge in a salty snack to pull it up again. Also, if the weather is changing I sometimes skip a pill. I think the air pressure change triggers a headache normally for me and the med makes it worse.

Also it seems like the med does good and bad things with my sinuses. It makes them flow better... But I have one small nose bleed every morning.

Good luck!

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now