New here - erectile pain

[scotty]

Hello - I've had Peyronies Disease for 3 years.  Worst part is painful erections.  (They often wake me up several times a night.)  I don't have a bend but I have some narrowing at the base of the penis and my penis now points to the right (used to be straight).  I'm on PAV but have seen no change.  Doctors keep saying that pain is supposed to go away in 18 months, but that's not the case here.  Anyone else?  Also, wondering if anyone has gotten xiaflex for the pain and not for the bend.  It's the pain that I desperately want to resolve.  Finally, I couldn't handle Cialis but I'm on Stendra.  Anyone else using that one?  Would be grateful to hear from you.  Thank you.  

[UrsusMinor]

Hi, Scotty.

That's pretty long-lasting pain. I have pain with erections, and pain while flaccid, but awakening with painful erections "several times a night" for three years is pretty surprising. (Still, I'm only seven months into this happy sleigh-ride to hell, so I might be saying the same thing in a couple of years.)

My first question is why your doctor has you on Stendra, of all the possible medications? Cialis is slow and long acting. Viagra is faster and shorter acting. From my limited understanding, Stendra is designed for people who want 'erections on demand'--e.g. within 15-30 minutes after swallowing the pill. Why would a doctor give you that for generalized blood flow? If you are that responsive, then Arginine, or better, Citrulline Malate, might seem like better options.  

How could you 'not handle' Cialis? How much were you taking? If you are experiencing erections so frequent and painful that they wake you "several times a night," I would question whether you should be on a PDE5 inhibitor at all.

As to the pain, I had significant pain relief from the Priapus shots--but I want to emphasize that this doesn't really prove anything, it's only my experience. (I think that most people who had the shots on this forum were beyond the pain stage. At any rate, it isn't often mentioned.) The amount of pain people experience from Peyronie's is totally unpredictable, and some people experience pain only when erect, others mostly when flaccid, others seldom, others all the time. The 'pain will go away in 12-18 months' is essentially what someone wrote down about the 'acute phase' thirty years ago in some medical journal, and urologists have been parroting it ever since. If there is anything substantive showing the average duration of pain--or even that there are such things as 'acute' and 'chronic' phases--I haven't seen it. I think it's medical mythology.

As to the Xiaflex issue, as far as I know, it hasn't been administered for pain per se. In the absence of a bend, I'm not sure where it would be administered, since it is supposed to be dissolving the plaque causing the bend. In any case, the approved FDA use requires a 30 degree bend, and the stated purpose is to remove the bend.

I'm very sympathetic with your pain issues, since I've been in pain flaccid and hard for more than half a year.

I'm sure we'd all like to know:

--What were your Cialis dosages
--What were your adverse symptoms
--The reasoning your doctor had for prescribing Stendra

If we knew that, we might be able to be more helpful...although most everything about this disease is mysterious!

Good wishes!

[scotty]

Thank you for the response.  I got very bad lower back pain from the cialus.  Stendra is 50mg a day and I was told that it will still help with blood flow at the low amount.  

[skunkworks]

You might do well to try Levitra, it is a more selective pde5 inhibitor than cialis.

The physiological relevance of PDE11 is yet unknown, but PDE11 is found, among other places, in skeletal muscle tissue. Tadalafil is the PDE5 inhibitor with the lowest selectivity ratio with regard to PDE11. Back pain and myalgia are more common with tadalafil than with other PDE5 inhibitors, possibly owing to its effects on PDE11. Myalgia and back pain, however, have also been reported during treatment with sildenafil and vardenafil, although the effects occurred less frequently.[38,41]

Medscape: Medscape Access

[UrsusMinor]

I'm a little confused. Generally the dosages of PDE inhibitors used for blood-flow enhancement in Peyronie's are lower than the dosages prescribed for intercourse.

For example, the standard dosage of Cialis for intercourse is 10 mg, bracketed by a lower dosage of 5 mg and a higher dosage of 20 mg.

But when they talk about low-dosage Cialis for Peyronie's, usually people are talking about 2.5 mg. (Some people use 5 mg as their low-dose, but 2.5 mg is sort of the reference point.)

What dosage of Cialis were you taking? If you were taking 'intercourse' dosages, it's no wonder you are waking up with painful erections several times a night. Were you taking only 2.5 mg, or more than that?

In the case of Stendra, the standard dosage for intercourse is 100 mg, bracketed by a lower dosage of 50 mg and a higher dosage of 200 mg. This follows the exact pattern of dosing for Cialis: a standard dose of 100%, bracketed by options of 50% and 200%.

So a Stendra dose of 50 mg strikes me as rather high if all you are trying to do is increase blood flow. By analogy with Cialis, I'd expect a dose of more like 25 mg of Stendra.

The 'waking up with painful erections several times a night' will probably continue to be a problem if you take significant, intercourse-level dosages of any PDE inhibitor.

[james1947]

For Peyronies treatment without ED one should take 2.5 mg, usually with Pentox.
For Peyronies treatment with ED one should take 5 mg.
As Ursus said, 10 mg daily is far too high.

James

[scotty]

I can't thank you enough for taking the time to explain this to me. I do not have ED at all.  When i was on Cialus, it was a dose of 5mg (low end), never 10mg.  Now with Stendra, it's 50mg (low end).  I have a few questions please:  1. Is Cialus or Viagra or Levitra better than Stendra for our condition?  My understanding is that, in low dosage, they basically do the same thing.  Is that incorrect?  (I'm too scared to try Cialus, even at a lower dose, as my back pain was quite severe.  I thought lower dose of Stendra was generalize blood flow?)  2. How does the ED medicine help our condition if we're having proper erections?  3. I read on one site that we're supposed to masterbate every day, is that simply because it's important to get an erection -- I didn't understand the reason for that suggestion?  Again, thank you so much.  By the way, I'm 44 and live in Los Angeles.

[james1947]

Have researches that shows the low dose Cialis together with Pentox getting better results for Peyronies than combination with other ED drugs with Pentox.
The 2.5 mg Cialis is not for erection, is to fight the Peyronies.
Myself using daily low dose Cialis and Viagra for intercourse, as I have ED
Regarding masturbation every day my opinion is negative. Better using VED carefully for 15 to 20 minutes daily, it will make the necessary blood flow for the penis health.

James

[UrsusMinor]

1. Cialis is designed to be long-acting, while Viagra and Stendra are to provide short-term erectile capability. They undoubtedly would help to some extent, but the reason Cialis is usually preferred is because it has such a long half-life. The purpose isn't to create erections, it is to have more blood flow in the penis when flaccid.

While 5 mg of Cialis is a low dose for ED, it is 200% of the recommended dose for Peyronie's without ED. I have never felt any ill effects at 2.5 mg. I would be afraid to take 5 mg, because 2.5 gives me erections more often than convenient.

2. If you don't have ED, then the dosages of Cialis OR Stendra your doctor has prescribed are too high. He is prescribing as if he is treating ED, not Peyronie's.

3. I don't know where you read that we are supposed to masturbate every day, but that's silly. Occasional erections are good, to keep the equipment in shape and stretched out, and maximize blood in the penis for a while, but frequent masturbation probably isn't a good idea. There is a lot of inflammation associated with Peyronie's, and masturbation (and ejaculation) can aggravate that. And, many people find, result in an increase in pain levels.

On the advice of NeoV, I took a six-week break from voluntary ejaculation (what happens when I sleep isn't under my control). It resulted in major decreases in pain, and a more normal flaccid hang. I still got erections, mind you; I just didn't do anything with them!  

[scotty]

THanks so much.  So if I'm taking stendra and that is shorter acting, should i split my dose to twice a day?  Also, if i take too much, can that cause problems.  I'm on 50 mg stendra every morning right now.  Sounds like i should go down to 25?  What do you think?

[UrsusMinor]

I think you'd be better off splitting your dose. And if you are being awakened by frequent painful erections and don't have ED, then your daily dose is probably too high, too.

The Cialis I use is 10 mg, so I have to cut it in half and then cut the halves in half to get a 2.5 mg dose. Works fine, though. So if you are taking 50 of Stendra, you might want to try splitting it into quarters (what's that, 12.5 mg per quarter?) and take 1/4 in the morning and 1/4 at night.

I don't think Stendra comes in lower dosages than 50 mg...

[james1947]

Maybe 1/4 of 50 mg Stenda (12.5 mg) is just enough as daily dosage if don't have ED?
I was trying out this dosage and see the effects.

James  

[UrsusMinor]

James has a point--why not start low and work up?

The only thing to consider is that I understand Stendra is rather short-acting, so more frequent dosing might be better.

Do you think you can cut a pill into eight 6.25 mg doses?  

Seriously, you might consider supplementing a single small dose (12.5 mg) of Stendra and then take something else--say, citrulline malate--at another time of day.  

[scotty]

Thanks.  I will try that for sure.  I'm also taking 750 mg of Citruline twice a day.  And trying to eat watermellon as I hear that has lots of Citruline in it?  Thank you all.

[UrsusMinor]

Yep, citrulline is a good excuse to eat watermelon. Citrullus is Latin for watermelon!

But eat the white part of the rind, too. That's where most of the citrulline is!

[Old Man]

Ursus:

Strange that the subject of watermelons has come up in a discussion here on the forum. The 1930s after the depression struck, our family lost just about all our assets and had to be very frugal which made us use many and various ways to survive the poor house.

One way was that we made watermelon rind preserves from the white portion of the rinds. We uses sugar cane syrup to render the melon down into the sweet preserves as we called them back then. They tasted really good with some home grown butter and home made biscuits. I even carred some of the biscuits and preserves for my school lunches in my syrup bucket lunch pail!! Today, the rinds are usually just pitched out and never used as we did anymore.

We also used the white portion of the rinds as part of the citrus fruit needed to make fruit cakes.

Just a little reminder of where I came from back in the ''dark ages''.

Old Man  

[UrsusMinor]

Well, from what I'm told, that where most of the good stuff is.

No wonder people get so many weird illnesses when we become more prosperous--we start throwing away the good parts!