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Trimix, worth it, or just something else to worry about?

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Posted 10/9/2015 4:01 PM (GMT 0)
After 12 months I finally went in for the Trimix trial this morning. I was on daily cialis for six months following surgery last year, and while it seemed to help, that early on it was really tough to tell much. I since moved up to sildenafil, and while it got closer, it has still been a no go.

I've been hesitant about Trimix because of the Peyronie's factor, but if there's one thing the sildenafil did for me, it was to let me know that Peyronie's is at least moderately, already there. I never had any indications of this previous to surgery. Like anything, if you read too much about it, you're likely to become concerned about the side effects. Regardless, $180 later I'm out the door with 2 vials with expiration dates of 11-9-15, and some syringes and alcohol swabs. 1 unit lasted right at 3 hours, I was beginning to worry.

This isn't something I see me sticking with long term, but I'd be lying if I didn't say it was satisfying to have a firm erection for the first time in 12 months. Of course now the worry sets in, will it make things worse, am I doing the right thing, etc., and so on.

I suppose only time will tell, but for the short term it's a much needed reminder that things do still work, just not 100% naturally.

FWIW, I've been taking 2 grams of Acetyl L-Carnitine for the last 6 weeks in hopes it helps with the curvature. Another, only time will tell, but it's an inexpensive test, relatively speaking.

www.webmd.com/vitamins-supplements/ingredientmono-834-acetyl-l-carnitine.aspx?activeingredientid=834&activeingredientname=acetyl-l-carnitine
Posted 10/9/2015 4:17 PM (GMT 0)
It's possible that you just need this for awhile.

All I can say is, keep it up for awhile and see what happens.

do I dare say, "It's worth a shot?!?" ;)

Andrew
Posted 10/9/2015 8:37 PM (GMT 0)
Hey Thurman, You and I have very similar stats. I am 51 now but was DX at 49 and had 2 positive cores, one at 20% and one at 50%. I was a PT2C G6. I Had RALP 3-17-14. Never had ED until after surgery. I tried cialis with no success, and the VED. I found the VED worked but was very cumbersome for me. So, I finally went with the injections in August of 2014. I did them for a year. Peyronies did develop and Mayo suggested a traction device to help stretch the scar tissue. I used both until this past August. Almost an entire year. The peyronies has gotten 99% better but the ED is still somewhat of problem. The shots are not bad and very easy to do once you get used to them. Mayo had me injecting 3 times a week and wearing the traction device for 2 hours a day. Discontinued the VED completely. Then I was taking a 20mg cialis every other Monday to see if anything was happening. Like you, I did not want the injections to be long term, so I stopped them in August. I take the cialis PRN and am getting some reaction. Not the greatest yet but I am hoping. Mayo tells me that it takes 24 months to recover from our surgery so I am still hopeful. The injections are a double edge sword. Your function returns but you are giving youself a shot in your unit. I have told a couple of buddies about it and they cringe at the thought. So, you are right, "time will tell". Hopefully your outcome will improve and I wish you the best. I just wanted to give you my experience and some encouragement as I am 6 months ahead of you in the recovery process. Unfortunately I still am a bit leaky when very tired or having beers with the boys, how about you? Take care, good luck and don't be afraid of the shots. You'll be a pro before you know it.
Posted 10/10/2015 2:19 AM (GMT 0)
Thank you so much for your reply!

This is a tough pill to swallow no matter how you look at it, but it's one I'm really struggling with that I wasn't expecting. My wife has been dealing with RR MS for years now, and so as you can probably imagine, "doing it", isn't a huge priority for her. Regardless, I'm not dealing quite so well at the 12 month mark.

Anyone reading this that has posted here and gotten replies that say things like, "have sex as often as possible before hand", listen to these recommendations and act on them!

At this point I'm almost regretting I went in for the trial, I swore off trimix long ago just because of the PD possibility, but caved after seeing the "dog leg right" anyway. I've had considerable shrinkage post op, think "scared turtle, on a very cold day", ever since surgery.

I've injected so many shots, insulin, rebif, etc., neither for myself, but I have become numb to it anyway. I've literally administered thousands of injections. I watched without so much as a flinch today when Doc showed me how to do the injection.

I have noticed that there has been a return to more of a normal size today since the injection. Perhaps it was overdue to get something that forced things out of their shell, so to speak.

I don't have much in the way of leaky, unless I've drank quite a lot of beer. This has never been a problem for me except for while still in the bathroom. I no longer pee standing except in front of a urinal, sitting just does a much better job emptying for me. I never hear about the lid being up at home anymore either!

Thanks again for your reply, and encouragement. At this point I suppose I'll "go for it" with this round, but in all likelihood fall back on the sildenafil after this batch expires in hopes I don't make things worse.

Post Edited (Thurman) : 10/9/2015 8:23:35 PM (GMT-6)

Posted 10/11/2015 12:47 AM (GMT 0)
Oh boy now your talking right up my alley. I used the Trimix for 25 times with perfect results. Then wham 90 degree bend you can hang your hat on. Coat hook special. Haven't used it since, but everyone has different results. Many so called experts say the shots do not cause PD. I happen to think they do. You are the first person I have heard of that has recovered from PD. That is very good news can you help me find my way out of this PD mess, please? What did you do fix it?

Thanks for posting this and good luck.
Posted 10/12/2015 3:04 PM (GMT 0)
I haven't recovered from PD, but rather as I've been recovering from a ED standpoint, I've discovered that I have PD. Wasn't aware the bend was there, because I haven't experienced an erection up until only recently, when with the help of Viagra I managed enough of one to disclose the bend.
Posted 10/16/2015 5:01 AM (GMT 0)

Thurman said...
After 12 months I finally went in for the Trimix trial this morning. .....$180 later I'm out the door with 2 vials with expiration dates of 11-9-15, ........ 1 unit lasted right at 3 hours, I was beginning to worry.

???You took an ENTIRE syringe of the juice on your first time? or did you mean .1 unit lasted 3 hours. If you took the WHOLE syringe (1 unit) you are playing with fire. I know it may say "1 unit dosage" on the bottle, but ignore that. You may find that .1 or so is all you need.

Also, the stuff will last for 6 months or longer.... they put a short expiration date on there for legal reasons, because they have not done a clinical study to PROVE how long the stuff will actually stay viable, and therefore CAN'T say that it will last more than a month.

If you continue to use that much of an amount, be sure to have some nasal spray (phenylephrine) on hand as an antidote (unless your doctor has already given you an antidote to have on hand). Most of the time, they don't send you home with an antidote injection. If you hit the 4 hour mark & still full hard.... inject about half a syringe of the Phenylephrine the same way you injected the Trimix. In 15 minutes you'll be deflated.
Posted 10/16/2015 11:43 AM (GMT 0)
Thurman & Bv, you guys are both starting from a similar place but are a little further down the road than me. I'm sitting here looking at my first starter kit of Edex (alprostadil), looking forward to giving it a go, but also concerned about PD. I'm trying to convince myself it's not gonna happen. Good luck to you both.
Posted 10/16/2015 12:47 PM (GMT 0)
I found the Trimix to be very helpful. I tried a pump early on and it was OK, but not very comfortable. I think we managed actual penetration once using the pump. After trying that for a while, I got the prescription for the Trimix. I didn't use it a lot - maybe once a week to start. I wasn't crazy about the injection, and I "missed" a few times - no results at all. I never had any of the issues of it lasting too long, and I never had any issues with Peyronie's.

After about 6-7 months, I started to see better results with Cialis, and I gradually switched to that. But, from months 2-6, I was very glad to have Trimix as an option.
Posted 10/16/2015 12:56 PM (GMT 0)
Toby,

I think you are confusing "units" and milliliters. "Units" are the measurements marked on an insulin syringe and a 1ml syringe is divided into 100 units so each unit represents a volume of 0.01 ml.

But that said, I am confused by Thurman's statement, too, but for the opposite reason. For most strengths of trimix 1 "unit" is a tiny little dose. Before I got my implant I used to use 25 units of trimix "super" which is one of the stronger common formulas.

Trimix does lose some of its oomph if you keep it in the fridge too long but the only danger that out-of-date trimix represents is that the dose a man using old drugs would need might send him to the emergency room if he injects the same amount from a fresh bottle.
Posted 10/16/2015 2:12 PM (GMT 0)
It is a tiny amount, the first line on the syringe, must have been 10 units or .1? This is my first go at this, and due to bad timing, I haven't opened my own supplies yet to examine the syringes.

He gave me the go ahead to bump to .2 and max out at .3 because during the thirty plus minutes I was in the office I only hit about 50 or 60%. Due to this I decided to run into the grocery to grab something for lunch on the way into work when I was abruptly made aware that this was no longer 50 or 60% there. It's sort of funny now, but that's a grocery trip I'll not forget.

My uro said, "this is going to be cheap for you" which I believed until I saw the expiration date on the bottles. Still given three hours of firm results from just the first marker on the syringe, it seems safe to say that perhaps I could even get by on a little less. That said some minor weakening of the trimix may not have that big of a negative effect on me.

Post Edited (Thurman) : 10/16/2015 8:15:02 AM (GMT-6)

Posted 10/16/2015 3:08 PM (GMT 0)
Thurman,

While I officially have no advice about the expiration dates I will tell you that I used to add an additional month with no apparent problems. I have also frozen individual doses in syringes (needle end up, leave a small air gap for expansion when it freezes) and that worked fine, too.

If you look at your syringes you will probably see nine little tic marks between each line on the cylinder. Those are "units". At least they are on an insulin syringe which most of us seem to use. Your first shot was probably 10 units or 0.1 ml.

The process of adding a little bit more each time looking for the right dose is called dose titration. (You may remember the word titration from high school chemistry.) Be sure to follow your doctor's advice on dose titration but be sure to take things in slow increments, only going up a few units at a time.
Posted 10/16/2015 3:41 PM (GMT 0)
Actually I remember titration from my wife's Rebif medication, you must step it up slowly to lessen the associated pain from it. Didn't think of it in this instance, but I can see what your saying, a way of easing into things to avoid potential problems.


Thanks for your input!
Posted 10/16/2015 4:13 PM (GMT 0)
I used Trimix for about 8 months. It always worked and eventually I was able to get the dosage right so my erection would only last an hour or so. A couple of times I did have an erection for almost 4 hours. Luckily at about 11 months post surgery erections started coming back at night and gradually have returned to almost as strong as before. My urologist put me on a 5mg of daily Cialis for a few months to see if that helped or not. I have not had any problems with any type of curvature. Of course I had the usual anxiety of giving myself an injection, but quickly discovered that it was just a pinch. Good luck as you continue to recover.
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