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Problem with Trimix

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Posted 4/23/2013 7:37 PM (GMT 0)
My husband started using Trimix in March without any luck. He was given a 10 units dose at the urologist's office and it was not productive at all. He was told to gradually increase in 5 unit increments. After increasing in 5 unit increments in the past, He had injected a 50 unit dose last Thursday and a few days earlier had injected 45 units. There had not been any significant results with it thus far. He had both nerved removed. He had a doppler ultrasound in February and nothing was mentioned of a venous leak but did indicate arterial deficiency which the doctor said was caused by the surgery and the nerve removal.

Saturday night, he had indigestion and after taking an Alka Seltzer, was much better. Well, Sunday morning at 5, he became very dizzy and broke out in a sweat. We immediately went to the E.R. His heart rate was irregular. On two occasions during that visit, they thought he was having a heart attack and after blood work, they determined he didn't. Then they did a scan of his heart, abdomen and pelvis. They thought his aorta was dissecting. After those tests were negative, he was put into ICU. He had a heart cath (angiogram) yesterday. That test turned out okay also. His diagnosis has been determined to be A Fib (irregular heart rate). There was no explanation as to what caused it as he has had no problems in the past. In fact, his heart rate has always been about 50 and every doctor comments that he has a runner's heart. We are wondering if it could be possibly due to the Trimix. I did read on the web that such cardiac problems could be a side effect. I was just curious if anyone on the forum has had any similar problems with Trimix as nothing else has changed. To say the least, the Trimix went into the trash. His prescription was as follows:

Trimix #8 Prostaglandin PGE1 20mcg/Papaverine 30mg/Phentolamine 2mg 5ml

Is the usual prescription dosage?

He was sent home with a script for Toprol for the irregular heart rate and thus far, has been fine.

I would appreciate any comments as we cannot imagine what else could have caused the problem.

Thanks for all of the valuable information I have received from the forum.
Posted 4/23/2013 9:33 PM (GMT 0)
There really isn't a "usual" mix for Trimix. It is at first an educated guess by the uro, then can be adjusted based on results (my uro changes it to strengthen to mix so that you get more shots out of the vial once a baseline is established).

Mine is 10mcg PGE / 30mg Pap / 0.5mg Pheno, so yours is very different. Results are just ok with .1, and an ER trip with .13

I have not heard of any heart issues related to trimix. Is he taking an oral med (Cialis, Levitra, Staxyn, Viagra) at the same time? I was most strongly warned not to do those the day before or after a shot -

Has he been reviewing each doseage test with the uro?

Posted 4/23/2013 9:38 PM (GMT 0)
I've been injecting Trimix for about a year and I'm now using almost the same formulation as your husband. I started out with a weaker formulation and moved up to the 20mcg/30mg/1mg-ml formulation when I got no results with the weaker stuff. I have not had the same side effects as your husband is experiencing but do share the problem of it not working very well.

I slowly increased the dosage up to injecting 80-85 units of the stronger stuff. I have had better results with this formulation in that I have a bigger swelling but it still isn't at a useful level. And I had nerve sparing on the right side and partial nerve sparing on the left - so, the lack of results is baffling and frustrating. Based on what I've read in this forum, I may have venous leaking which prevents me from having total success with this medication. I still inject, however, hoping the Trimix will eventually help in the awakening of the spared nerves.

In any event, I hope your husband gets a solution on the strange side effects and is able to continue using Trimix. And I hope it helps him achieve success in what we PCa patients used to take for granted before our treatments.

Mike
Posted 4/23/2013 9:53 PM (GMT 0)

Thanks Mike.  I appreciate your quick response. 

I didn't know you could even go up further than 50 units.

When it was not working, we thought maybe we were sent some old Trimix as it had only a 30 day expiration date when I had read that most prescriptions had a 90 day expiration date.  Before this recent episode, we were thinking we would change to a local compounding pharmacy when we were ready to refill it.  The urologist had placed the order with a pharmacy from Boston as the doctor's asst. said they work well with the insurance companies.  Well, our insurance company didn't approve it.   We thought, at the very least, we could save the $35 from the shipping cost by getting it local.    

As of today, he is not interested in Trimix.   Since Trimix was the only thing that has changed, he is convinced it is from the Trimix.   He is having minimal luck with the VED pump. 

Thanks again,

Posted 4/23/2013 9:58 PM (GMT 0)
I haven't heard of any similar side effects with Trimix. In theory the drugs in Trimix could lower his blood pressure but the dose used for ED treatments is really quite small.

You should mention the Trimix to his heart doctor. He would be the one to tell you if the irregular heart rate is related to the Trimix (which I rather doubt.)

You should also talk to the doctor before he re-starts the trimix.
Posted 4/23/2013 10:11 PM (GMT 0)
Thanks 142.

No, my husband is not on the ED drugs as he had both nerves removed.  The urologist discontinued them as he said they do not work in that situation.  He had a penile doppler ultrasound to check blood flow in February and at that visit had his initial Trimix injection.  The doctor's asst. faxed the prescription to a Boston pharmacy.  He was given instructions, and a form to log the date, dosage and reaction and information for the ER if he had to go to the ER.  No mention of informing the doctor of the results, nor any mention of ever changing the formula.   They scheduled hin for a follow-up in 1 yr to discuss results.  The urologist that we visited was not the surgeon but one who specializes in ED and implants.  His main emphasis is on implants. 

I was surprised to learn the cardiac side effects as well.  Nothing was ever mentioned about it.  After this latest incident, I had googled each of the ingredients in Trimix.  On Drugs.com, irregular heartbeats is a side effect for Papaverine.   On Drugs.com, it lists cardiac arrhythmias, tachycardia and severe hypotension (low blood pressure) as side effects for Phentolamine overdosage.  All 3 ingredients list hypotension (low blood pressure) as a side effect. 

Thanks again.

 

Posted 4/23/2013 10:52 PM (GMT 0)
You're welcome, jg2448. I use the 1ml syringes, which hold up to 100 units. I have injected up to 95 units without success. I figured that I was just wasting medicine at that level since it got me no better results than I got at 75-80 units. Since I'm injecting just for rehab now, I just stay at the lower level and hope it eventually produces a miracle.

I've had better luck with the vacuum pump, which gives me results closer to what I was getting before the surgery. Despite the limitations of using a pump with constrictor rings, the pump is better for me than the Trimix is. My insurance covers the Trimix; so, it costs little to keep trying it with the hope it's helping somehow. I hope your husband finds a method useful to him without any of the downsides he's experiencing now.

Mike
Posted 4/23/2013 11:07 PM (GMT 0)
Mike:

My husband uses the VED pump as well. It appeared that the results he was getting recently with the pump was just as well as he was getting with the Trimix.
Since both nerves were removed at surgery, his chances of recovering naturally are nil.

Peter:
Thanks for the reply. Richard had gone to his primary doctor last week when his blood pressure was elevated and mentioned the Trimix and she had never heard of it. She looked it up online and said one ingredient lowered blood pressure and one increased it so she didn't think that was the problem. I hadn't seen anything regarding elevated blood pressure though.

We had mentioned it to the cardiologist and he was not familiar with it either so I guess we will check with the urologist and/or the pharmacy.

Thanks all,
Posted 2/27/2015 9:04 PM (GMT 0)
Hi....In regards to the heart side effects. Yes if you look up each drug in the Trimix solution they all have potential heart side effects as well as liver and more. Successive use of Trimix say 3 days in a row leaves me exhausted my blood pressure goes so low. If you take another drug say a sleeping pill look for INTERACTIONS!!!
You need to know how best to use Trixmix and that takes experiment with the dosage but also knowing all the side effects, which most likely if you had it compounded you didn't get. I urge anyone on this to look up each of the 3 drugs for the side effects and just be aware of them so you don't panic and end up in the emergency room for no reason. The original poster did not mention if they told the attending physician at the hospital of the Trimix usage. Very foolish. Drugs can be fantastic tools but only if YOU are in total control. That means you have complete knowledge of what your doing, the drug, its effects and SIDE effects and it potential interactions.
This stuff can be life changing. You want that to be in a good way!
Posted 2/27/2015 9:35 PM (GMT 0)
Yes, all of the attending physicians (ER and cardiologist) at the Emergency Room were made aware of the dosage; therefore my husband was not foolish.   My husband was using the dosage according to his physician at MD Anderson Houston.  The drug was purchased from a compoundingnpharmacy suggested by his doctor. 
Posted 2/27/2015 10:37 PM (GMT 0)
I'm so glad! you didn't mention it in your post. When you go to the emergency room for something heart related they need to know everything your on even vitamins, coffee, ect. not everyone realizes that. Hopefully others who might read this will be aware. I hope all is well now with your husband.
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