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I fear we need to stop Trimix

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Posted 11/11/2012 2:28 PM (GMT 0)
Last night Michael used his Trimix, he injected at about 9:45 PM, and finally started to soften up around 2 AM. At 11:00 he took his first dose of meds that the URO prescribed to reduce his erection. At around 2 hours he is suppose to take one and then 1 for the next 2 hours, total of 3.

A bit of history for those who dont know or remember. Last February, which was Michaels 1 year follow up da vinci surgery appt. The Uro prescribed Trimix. He went back a week later to have his first injection. He injected a very large amount, I cant remember, 2.0 I think. he only kept Michael long enough to see that he was hard. At 3 hours, Michael called and told him the erection was not softening. He made him wait another hour and call back. At 4 hours he called back and the URO called in the prescription to help bring him down (cant recall the name right now) - giving the same directions as I listed above. To shorten the story, this erection ended up lasting about 8-9 hours and he drove to the ER, but never made it in the door. So the URO told him to drop by half for next injection. Next time he tried he used 1.0, still too long of an erection, about 6 hours or so, but this was with him starting the bring down pills at about 3 hours. he then became gun-shy (if you will) and it took several months to try again. When he did try, he was at .5 and this seemed to work better, but still a 4 hour erection, starting pills at 2 hours. It has been another few months of no use until last night.

I am afraid that after last night he will not want to use Trimix at all, and I am afraid that trimix is going to end up doing some serious permanent damage. Ideas? Suggestions? Thoughts? I remember seeing the commercials and laughing at "go to the ER if you have an erection lasting more than 4 hours" Michael would say "I would love an erection lasting 4 hours, thats 4 hours of fun!" At this point 4 hours of erection and just the possibility of it brings serious fear and anxiety to us.
Posted 11/11/2012 3:16 PM (GMT 0)
Susan!
Wait... Wait... 1.0?!!? 2.0?!?! Are you kidding me?!?! How the heck are you getting that much in?

Most of the guys here use around 0.15 - 0.20 ml. (20 units on the insulin syringe.) Some guys are 0.05! One person is 0.03! Do you know how little that is? Nothing! Vapors!
I started with 0.08 of single strength and kept going up 0.04 at a time (with minimal success). When I reached around 0.40, I went to double strength and started increasing again. When that didn't work, I went to higher concentration. That didn't work so I went to Quad mix with the highest possible concentration. It might be my imagination but I believe it glows... One of the guys who visited my place during GFMPH was afraid to even look at the bottle!

The takeaway message is, start very small and work up. If you inject a small dose that does not work that is good news! It means somewhere between that dose and 1.0 there is a happy medium. Your homework is to find it.

Jeff (still afraid to try the Quad mix.)

Don't give up on it. Start very low!!!
Posted 11/11/2012 3:58 PM (GMT 0)
I know it was an extremely high dose. But Michael won't listen to me, only the Dr. And he started high and is moving backwards. Crazy I know!
Posted 11/11/2012 4:01 PM (GMT 0)
I'm with Jeff. Starting high and titrating the dose down seems peculiar. In theory you should start by having him close his eyes and think about Trimix while you wipe a small sewing needle with alcohol and give him a quick jab*. If he gets a six hour erection then you know his problem is, shall we say, not dose related. If no reaction, then you could start with a tiny little bit (say ten units of single-strength Trimix) and work up from there.

I started at 25 units and have gradually worked upwards to 50. I am going to get a scrip for double strength when I see my uro tomorrow.

*Joking...
Posted 11/11/2012 4:21 PM (GMT 0)
Jeff... Don't be afraid of the Quadmix. I use it and only inject .05 to.1. Two good things about it is they can mix it for you in varying strengths and it is usually cheaper than most other meds. I get it for about $30 a vial and get between 100 to 150 shots. Downside is you have to keep it in the refrigerator, that makes it a little rough for taking it on trips. Susan.. your husband needs to read these posts and see what dosage other men are taking, Uro's aren't always right!!!
Posted 11/11/2012 5:28 PM (GMT 0)
Susan,

If you need to adjust the dose down, then do it. My experience all the way through this PCa treatment journey is that the docs assumed a pretty standardized approach. If they are more focused on following their protocol than adjusting to the needs of the patient, it is up to the patient to learn and speak up.

My test injection by the uro was 20 units which is .2 cc. This produced the proper response in the expected 5 to 10 minutes, but only lasted about 10 minutes in the office. Uro said this was just what he expected and to start working up from there. The written prescription said to increase by 20 units per step, going all the way to 100 units if needed.

Based on advice from some here about doing every dose twice, I did NOT increase the dose for the first time at home. Good thing too, as it was nearly 2 hours before things subsided. Got a pretty miserable ache from the alprostadil to boot. I dialed back to 14 units (.14cc) and that is about right for me.

Note that my results are at the 'standard' strength mix, according to the pharmacist. In my case, the pharmacist was more helpful than the uro in understanding how to dial in dosage, side effects, and when to start using nasal spray to bring things down. He was definitely more conservative than the uro and in line with the advice found on this site.

I certainly understand your husband's reluctance. I don't care to repeat the ache from even 2 hours and can't even imagine well over 4 hours. My non-medical opinion is cut the dosage by more than half. Far better to get almost no reaction than have another traumatic experience. Then if needed increase by very small steps.

Last minute thought - a year ago there is no way I would have believed I would stick a needle there, or been posting on an Internet forum about the experience. This community is amazing for the support and knowledge it offers us.

Explorer
Posted 11/11/2012 6:02 PM (GMT 0)
Susan,

I'll admit that Trimix is a "mixed" subject for me. I feel that it is useful, but at a certain point an artificial erection becomes an impediment in every situation I've been in. When I found a one-hour measure, I was happy, I pushed it a tiny bit, and as a result, was getting ready to head to the ER at four hours. Knowing what I know now, being happy with an hour would have been the best course for the future. I was rather astounded when you first posted his amounts. My uro asks to be sure you have not used an ED pill in the 24 hours preceeding, starts at 0.10, and evaluates from there.

So for me, some key amounts were -

0.10ml = 70 minutes

0.11ml = ~70 minutes

0.13ml = 230 minutes

0.10ml has proven to be 50 - 90 minutes, probably depending on my blood pressure, stress level, etc.

My Rx is below (MG per ml), and I use a BD 1ml TB Syringe provided my the pharmacy, which is marked in increments numbered .1, .2, up to 1.0ml, with hash marks for .x1 - .x9.

PAP 30 (papaverine)

Phen 0.5 (phentolamine)

PGE 0.01 (prostaglandin - PGE1)

Posted 11/11/2012 6:23 PM (GMT 0)
Hi Uro has told him he is NOT to take any oral ED meds while taking the Trimix. I have told Michael to ask about the alternating days of shot vs oral, and he has been told he will not prescribe an oral ED med while he is prescribing Trimix.

The syringe he uses is the same as 142, BD 1ml.

As for having him read the thread, he wont. I read and then share with him what I think he needs to know. Then he in turn either dismisses the info, asks the URO, or listens and takes the info to heart. He knows at this point he needs to lower the dose the next time he uses it. Seems very backwards to me, starting high and moving lower, but that is where we are. My fear at this point is that his bad experience, the pain, the fear of having to go to ER, the possibility of damage and never having another erection may be that he has had enough and may not want to try again. Bad experiences combined with Low T, his lowered sex drive and slight depression, makes him not want to try again, which I understand. His love for me and pleasing me will make him continue to try even if it is something he doesnt want to do. My concern is that he will do the injection "for me" and in the process really damage himself.

Will just have to support him the next time he chooses to inject and ask him to lower the dosage.

Blah, who would have ever guessed that this would be an issue for us at 41/42. Having one of those days that I really HATE cancer and am scared for my man, his physical health and his mental wellbeing, his fragile ego cant take too much more I dont think.
Posted 11/11/2012 8:45 PM (GMT 0)
Being an engineer in part of my past life, I would be interested to try a low number now. We call it integral-halving in computer programming. See what the two boundaries are, and home in on the target. Send him to talk to some old-war vets who served in artillery units to discuss the theory.

Also, using less for once doesn't "waste", as he may turn out being able to accomplish a happy medium with a lot less Trimix, and get more comfortable with it, while getting more shots from the bottle.

Posted 11/11/2012 9:29 PM (GMT 0)
SUSAN,

Don't make me come over there!!! 1.0 is nuts!!! Look, why on earth would his Uro think it makes sense to go big and work down? I can think of only two reasons:
1) He owns stock in the local medical center.
2) The Uro has the hots for you.
Those are the only 2 reasons I can come up with - other than incompetence.
Please kick him in the nuts for me. What else can I say?

Every other person on this forum was told to start small and work up. Let me repeat. EVERY OTHER PERSON! Starting at 1.0 ml is dangerous. W T F!!!
Ridiculous!

Please try a low dose. Don't give up.

Jeff
Posted 11/11/2012 10:24 PM (GMT 0)
Jeff,

There is a test that some urologists perform that can tell them a lot about a patient's ED in a single office visit. You have him drop his trousers, put a loose-ish constricting band on his willy, shoot him up with a metric ****load of Alprostadil, watch him for half an hour, take off the ring and watch him for another half an hour, and then send him home with instructions to come back in three hours if he is still rock hard.

The decision tree looks like this:

(start) Inject large amount of Alprostadil
|
No erection after injection => Arterial flow problem. ICI won't work.
|
Takes two nurses to hold him down to take ring off => Sensitive to Alprostadil. ICI problematical.
|
Immediately loses erection when ring is removed => Venous leak. ICI probably won't work well.
|
Gradually loses erection when ring is removed => Slight venous leak. ICI may work w/ the ring.
|
Comes back later in the day, still erect => Get him deflated, prescribe low-dose and titrate up.
|
Prescribe moderately high dose (but less than used in test) and expect to adjust as needed.

Obviously the urologist screwed it up but it could be what he thought he was doing.
Posted 11/11/2012 10:28 PM (GMT 0)
Susan,

Putting the engineer hat back on, if the syringe is the same (BD 1ml TB Syringe, Ref 309623), them he can not possibly be using 2.0ml in a single shot, as that would require two injections (syringe is 1.0ml). Could he have used a different syringe with different markings the first time? That is a common problem here when we talk about doses.

You mention a later, but still too much, injection at 0.5. I can believe that quantity being used, some of the guys here need that, but clearly Michael does not. Remember that I mentioned the change from 0.10 to 0.13 being very important in my case.

I am happy with 0.10ml. It is almost hard to draw that small amount in the syringe we are talking about, because mentally it seems so small as to "not be enough" after you've seen all these medical shows where they fill them to the brim. But it is, for me.

Also, think in terms of the vial. My pharamacy puts my 10ml in two 5ml vials, and gives me 20 syringes. It sort of reinforces the small dose for me - that vial is small, the dose is small.

And another positive thought - a failure for too small a dose does not generally involve a trip to the ER, and tomorrow is another day.

Posted 11/11/2012 11:06 PM (GMT 0)
The 2.0 was given by the URO in his office by the URO. When we came home and tried for the first time, he had us on our own give 1.0. Sorry if there was confusion about that
Posted 11/11/2012 11:13 PM (GMT 0)
2.0?!?! If you don't kick him in the nuts I will !

Do you know the concentration? Whatever it was, that is still a lot of juice!
Yep, watch out! That S O B Uro has the hots for you. Michael had better watch his back.

J
Posted 11/12/2012 12:21 AM (GMT 0)
Susan, like

Jeff said...
Do you know the concentration?

If you have access to the vial we'd all love to know what it says on it.
Posted 11/12/2012 12:47 AM (GMT 0)
papaverine 27mg
phentolamine .45mg
alprostadil 45 mcg/ml
Posted 11/12/2012 1:12 AM (GMT 0)
What?!?!?! Now I am sure that Uro is a Jack *ss!!!
Using the same scale as your numbers: 27, 0.45, 45
Single strength Trimix is: 16.7 , 0.56, 5.6 !
Double strength Trimix is: 30, 1.0, 20!
The prescription he gave Michael is near what we call double strength and the S O B gave him 10x what everyone here starts with.
I am really p*ssed at this !!!!

You want to talk? PM me and I'll give you my phone number! Or I can call you.! If I am not around I'm sure Cajun Jeff will talk to you too. Screw what the idiot Uro said. Start at 0.10 !!!! The guy is a jerk.

Note:I am not a doc. But I am not stupid either! I am an engineer and understand the difference between a mg and a mcg. Does he? Those concentrations and doses are ridiculous. How many other guys is that ****head sending to the hospital???
J

(Guys, Have any of you been even close to this amount of Trimix? Sadly, I have. but I think I'm using more than anyone on the forum.)

I am so PO'ed by this I have to walk away. I can't stand it. Tell Michael!

Post Edited (Worried Guy) : 11/11/2012 6:18:09 PM (GMT-7)

Posted 11/12/2012 1:18 AM (GMT 0)
I guess if that is such a strong dose it makes sense to why he is having such long erections. He stated that after his orgasm last night, he was harder than he was before it and it really hurt. He is talking about lowering the dose next time he gets up the nerve to try it.

looking forward to hearing others input on the dosage
Posted 11/12/2012 1:24 AM (GMT 0)
Susan,
We have had many discussions about this. Franktalk has a whole section on injections. Nobody, NODBODY starts out that high. N O B O D Y ! Get it?!?!?

Guys , jump in here and tell Susan and me what your first dose was. Was it 2.0ml (200 units) of double strength? No f -ing way!!!! My first was 0.08 (8 units) ml of single strength.
Jeff

Now I will walk away. I am pounding my keyboard and must stop.
Posted 11/12/2012 1:30 AM (GMT 0)
I'm thinking that Jeff is about to call out the GFMPH team for a site intervention.

Joking aside, this is one case where too much of a good thing is actually dangerous. I would ask the compounding pharmacy where you got this "How does this compare to other patient prescriptions?" They won't be able to give you much information, but a ballpark answer would be called for.

Posted 11/12/2012 2:01 AM (GMT 0)
OK I took a shower and calmed down a bit.
You have little 5 ml bottle of trimix that cost you about $88, right? Cajun Jeff uses 0.05 ml of single strength so he gets 100 shots from a bottle that size with half the concentration. Most of us started out with a dose that was <1/25 of that bottle (at half the concentration!) Your Uro gave Michael half the f- ing bottle with 2x the concentration of single strength!

Is he part owner in the compounding pharmacy?!?!
I'm pounding the keyboard again. Must... walk... away....
I sent you my home and cell phone numbers. Feel free to call.

Look at this HW thread about quadmix and trimix concentrations.

Good luck to you both.
Jeff
Posted 11/12/2012 2:09 AM (GMT 0)
Worried Jeff, in all the time I have known you, I have never seen you so fired up about anything, but I don't blame you, I know you are right. Have no idea what that Uro was thinking, sounds potentially dangerous to me. I don't believe in doctor bashing, but something major is wrong here with the advice this doctor gave the patient.

david in sc
Posted 11/12/2012 2:15 AM (GMT 0)
Cajun Jeff here Susan, I will tell you that Worried Guy Jeff is correct about my dose. You can feel free to contact me via email and we can exchange numbers as well.

I think I vote for kicking the Uro in the nuts! Worried guy.. you want to hold him down for me.

Cajun Jeff
Posted 11/12/2012 2:34 AM (GMT 0)
GFMPH - helping resolve a fellow HW member's issues.

NOT GFMPH - feeling a somewhat painful "caving in" of certain organs.

Calling upon the GFMPH team outside of a normal semi-annual meeting? Priceless!

I've not been to North Carolina in years. Checking flights ... Hey, only the third air trip in three years for me!

Seriously, you have our attention, and access to our emails. If we need to explain unpleasant realities to Michael, a conference call can be arranged. 

 

Posted 11/12/2012 2:38 AM (GMT 0)
I think calling the compounding pharmacy is a great idea, due to privacy laws, I agree, I probably wont get much info, but cant hurt to see their thoughts on the strength.

Will keep you all updated on the next time, may be a while. Any more input on dosage would be fantastic!!

Susan
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