XIAFLEX DANGERS!!!

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james1947

I got this PM from gringoviajero, got permission to post it on the Xiaflex board
Here it is:
QuoteI posted on your "Xiaflex Results" board yesterday.  Basically, I had a serious mishap; the Xiaflex ate through the skin and left a hole, like an ulcer, about 1.5" in diameter.  My doctor discovered this when he went to give me the 8th and final injection.  He sent me to the emergency room and operated.  He was as scared as I that the drug had damaged my tunica.  If you recall, in March I had a mishap with the 3rd cycle, a hematoma.  The MRI then said I had a tunical rupture, but when they "degloved" my penis, the surgeons discovered the MRI was, fortunately, WRONG.  I had no permanent damage.  This time, once again, I was lucky and my tunica was not damaged.  My doctor thought he would have to graft skin tissue from my scrotum onto my penis because so much skin was lost, but he was able to draw the wound closed.  My wound is in 3 branches and pulled together like a drawstring purse, if you know what they are.  I was very lucky again.

Dr. Carrion talked with U.S. Bioservices (I'm sure you know who they are) and they said I could get another vial of Xiaflex for the 12th injection.  We will see how well I heal and how my erection looks afterward.  It may not be worth the risk.  I have had emergency surgery on my penis twice in 60 days because of Xiaflex.  It is very powerful, but that is what makes it so dangerous.  And the COST!!!  When I began injections in November, the cost was $7500.  Now each vial costs $10,000!  My first surgery cost $35,000 and this 2nd one cost $25,000, and that is just the hospital.  The doctors' fees were several thousand more.  The insurance pays nearly all of it, but they have spent almost $200,000 on me.  Unbelieveable!

If my erection is sufficient to have intercourse now (and I STILL do not have a girlfriend), then I probably will not be writing more on the Forum.  Please feel free to post any of this that you like where you think best.  I will say that I made mistakes in modeling too soon after the injections, that I should have waited a week, and that I should have been more careful.  Xiaflex is effective but dangerous.  

Thank you!

Hope it will help people that want to decide (or not) to go on the Xiaflex way

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Jonbinspain

Thanks for this, James. Gringiviajero's story is a scary one indeed!  

I'm very glad now that I listened to the advice of Dr Kuehhas and elected for surgery instead of Xiaflex. Apart from the dangers highlighted here, as Franklin told me, it's almost as expensive as surgery and there are no guarantees it will even work!  

Pfract

Always thought he was mega crazy on not waiting the recommend time after the injection. Also, I find it awesome that he admits he was wrong.  Not everybody does that!

QuackAttack

I find it hard to believe that a drug can inflate $2500 in a matter of a few months. There is no way the cost of production has this much inflation. Do I believe it is occurring, absolutely!!! This is just another case of Big Pharma gouging people that have few if any other options. I'll bet if you were in Mexico or Thailand (with a well trained doctor that is) you wouldn't pay more than $1000 per cycle, if that. This is just another example of how corrupt the drug industry is.  

popopo

yep.. and the worst part is that xiaflex isn't even that effective and it's very expensive. I'm sure there are better ways to spend all that money and it's almost like they needed to come up with "something" and they thought oh well.. it's expensive, we can get it fda approved and there are no other fda approved treatments. Jackpot!
Age: 25
Date of onset: 17
Symptoms: sharp pains, numbness, change in shape/size, hourglassing and discolaration from jelqing/VED usage as a teen. Diagnosed with a venous leak and possible scarring.
Treatments tried: cialis, pentox and VED didnt help

Crooked_Stick

Members....I have to say that Xiaflex CAN BE a very safe effective therapy. All of the adverse effects noted on this board and elsewhere can be attributed to two things: either the drug is administered incorrectly or the patient is not following protocol after the injections. So, find a doctor that has plenty of experience and don't get crazy with the modeling afterwards. In my doctors office in Houston, they have people lined up every day getting this treatment and so far have had no major problems. Yes I think it is OK to do some stretching immediately afterwards but NO VED for at least a week. It also helps to get your penis wrapped for 8-12 hours after injection. This will prevent most of the bruising and swelling. Also putting localized suction on your penis is not a good idea ever! I'm really sorry Gringo had these issues but he brought it on himself by doing some things that were dangerous.

Xiaflex is not a cure but it is a starting point and a sign that the medical community is taking this god-awful disease seriously.
Born 1960, Diagnosed 2013
Initial 40 degree bend, 1" loss, Xiaflex 3 rds of 2 injections
Current 25 degree bend, no palpable plaque, 1/4" loss
VED 5-6 days/week, traction daily,
TRT 20 ml twice weekly, Cialas 3 mg - No ED - Doing Well!

yyy

Do you think gringoviajero did not respect the guidelines once again? I remember the 1st mishap was caused by VED used too early, but what about this time?

james1947

From QuackAttack
QuoteI find it hard to believe that a drug can inflate $2500 in a matter of a few months. There is no way the cost of production has this much inflation.
Hard to believe indeed! Increased production reduces costs, not increased costs.
In any case, from our forum experience, no helping significantly also.
Maybe all (almost all) the forum members are some how rebellious so this is the reason of the disasters, not Xiaflex of-course :(

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

gringoviajero

Boy! have I got the tongues a waggin'.  Well, it's been said we can save ourselves bother by learning from the mistakes of others.  So let me clarify a little and you can learn from what I did.

The 4 March surgery was primarily due to a misdiagnosis.  I got the whole mess started by applying vacuum to the indent, as I've related, which resulted in a hematoma.  It wasn't really a timing issue, I don't think, because I could've popped a vessel at any time during the modeling period, probably.  And it wasn't a nutty idea because I discussed it with the doctor first and he didn't poo poo it nor did he encourage it.  He just said it was an "interesting approach."  I took it upon myself to try it and it failed.  But that's science.  It's risk.

What followed was a precautionary MRI.  I had no symptoms of a fracture, but they wanted to play it safe.  Unfortunately and surprisingly the MRI was in error.  This is why they operated.  As small compensation I am now to be the headliner in a medical paper they're writing about reevaluating the usefulness of MRIs in diagnosing fractures.  According to my MRI, I had a tunical fracture; no doubt about it.  There will be my photos too.

The second disaster was just bad luck.  Injecting into an erection, Dr. Carrion says, is becoming more common practice now among Peyronies Disease docs.  There is usually no complication.  I just got a bad break.  I assume my blood pressure forced blood and enzyme back out through one or more of the 3 injections holes in the tunica.  The enzyme went between the Buck's fascia and my skin and had my penis for lunch.  It pooled and had two days to munch away.  When he went to give me the second shot, found the blister and wiped it, the tissue just fell away like a wet Kleenix.  Talk about upsetting!  I don't know which of us was more concerned.  It was a scene, I tell you, but his staff is great, very comforting and reassuring.  And I wasn't bleeding to death or anything; I even drove myself the two blocks to the ER.

Seven weeks post-surgery I'm still healing.  My penis looks like a junkyard tomcat, but the erections are about what they were pre-disaster.  I'm still about 30º, so at least I didn't get worse.  Believe it or not, if he lets me I'm going for the 12th injection again.  There's a fine line between bravery and insanity, I know, but I do believe Xiaflex is worth trying.  What happened to me was two anomalies; just bad luck combined with my experimentation.  (Kids, do NOT apply vacuum to the side of your penis.)  I have every confidence in Dr. Carrion and his team.  However, Xiaflex is powerful; it has to be to work.  There are risks.  It's a risk/reward decision.  Only you can decide.

james1947

Thank you for the clarification, wish you fast and full recovery :)

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

gringoviajero

12 weeks since my emergency surgery and I still have angiogenesis.  Dr. Carrion says this is quite normal.  Speaking of "12", for some reason I speak (twice) of "the 12th injection" earlier.  My apologies.  Of course I mean the 8th injection.  Don't know what I was thinking.

For whatever reason, my erection has actually been improving since the 7th shot and surgery.  My bend has decreased from 30º to 20-25º.  All I can guess is that either, or both, the Xiaflex and the surgery loosened up the collagen.  Remember that my plaque is not the norm; it's soft and extends nearly the length.  It's like a tendon.

This improvement, though small, should be, I believe, sufficient for normal intercourse providing I have enough blood pressure behind it.  Cialis takes care of that.  The Xiaflex improved upon gains made to the hourglassing last year with my bromelain injections.

Speaking of bromelain, I've acquired another bromelain compound.  Those of you who've read my early posts on my experiments with this know what I'm talking about.  This is 5% bromelain in a base of Lipoderm HMW (High Molecular Weight).  When my angiogenesis is finished, I'll do a regimen of treatment, which I can detail later.  I've already applied it twice to see if I have a bad reaction, and I did not.  I'm looking forward to this experiment.

Again let me state that I believe we'll see in the near future a bromelain-based compound for Peyronies Disease.  Mediwound has it in the pipeline.  The question is what happens with Xiaflex' orphan drug status.

FriskyDingo

Gringo,

I am also optimistic about bromelain's future, and I really want you to share your experience with your new bromelain compound. I appreciate the risks you take to give us this information, true balls man.

Keep us updated.

Frisky