Xiaflex

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pvpey

I have been waiting over 2 years for today. Finally after a lengthy grievance process with my insurance carrier I was approved for Xiaflex injections. The problem was that my approval in August is only valid until the end of the year and my physician, Dr Gelbard was/is so overwhelmed with patients, his offices were not going to be able to get me my initial injection appointment until sometime in Jan 2015.

I called regularly to see if there had been any cancellations and was always disappointed. I finally reached out to the doctor himself via letter last week explaining my dilemma and he was able to somehow squeeze me in for the start of treatment before I had to endure another bout with my insurance carrier and get my treatment started before the deadline.

I went to his Burbank offices Monday for examination, 35 degree upward curve and penile retraction. Substantial scar tissue on top. For some time the retraction had become an issue forcing me to sit while urinating or possibly spray everywhere. I have lost about 2" in length, but could still function sexually (achieve orgasm) although semen had to be basically milked out. Luckily for me my condition had somewhat stabilized with no calcification about 18 months ago or Xiaflex would not be an option.

Since I live about 90 minutes from Dr Gelbard's offices on a good day with light traffic, I elected to rent a hotel room nearby for my initial injection today (Tuesday) being scheduled early morning and the bad weather. And I received my first injection of Xiaflex this morning.

I was told that there could be some swelling and bruising, especially after the initial injection, and that is no understatement. I drove home after and there was only a small bruise where injection(s) were placed. 12 hours later it looks like Tiger Woods took a tee shot and hit me right in the groin with his club. My penis and scrotum are almost black, with my scrotum the size of a baseball and penis very swollen. There is some discomfort and pain, but nothing like you would imagine after viewing.

I have to return on Monday for the second injection and again on Tuesday to go through a tutorial of stretching exercises to be normally be performed by patient after session is complete. Although due to swelling I'm pretty sure that will be postponed for several days. Session equals 2 injections a few days apart. Then I am to return in approximately 6 weeks for session #2 and so on up to 4.

So we'll see what happens and I will try and post updates here. I do encourage anyone who is taking the Xiaflex route to be be very pro-active. After contacting US Bioservices (company distributing Xiaflex) and answering some questions I was able to secure a grant of almost $6K for the medication and Auxullum (the manufacturer) also offered a very substantial discount to offset my out of pocket expense. After I make my insurance deductible (which is almost already met for other reasons) I may get the entire treatment completed for a nominal expense, albeit my monthly premiums are quite expensive.

US Bioservices also informed me that it is rare that patients do not complete all 4 sessions before completion.

I do hope that the bruising and swelling has peaked and will begin to subside by tomorrow. Best of luck.

 

james1947

pvpey

Wish you good outcome from the treatment.
Please continue updating us.

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

dfurman

One of my biggest concerns are nocturnal erections after receiving the injections. I was awaken in horror from my sleep on two occasions the same day of the shots. Apparently a spontaneous erection pulled on the tender tissues of the corpora and it felt as if a knife had Ben put through it.
The pain was so excruciating I nearly passed out in the bathroom. Swelling and soreness followed the rest of the day. I frankly thought I had a rupture, luckily was not the case.
Anybody else experienced this?

Are there any drugs to suppress erections, at least first 48hrs?
I'll ask my doctor next time as this was pretty scary.

 
Successful plication surgery by Dr Peter Stahl Dec 2018. Peyronies since Feb 2007. Tried Pentox, Propolis, L-Arginine, Xiaflex (10 shots), PRP Shot, VED & Traction with no significant improvement.

yyy

Ciproterone acetate, but you should start it several days before

biocob

An update after my xiaflex treatments this past year:  I went through three rounds of shots, for a total of six injections between June and November of 2014.  Injection #6 went very badly (as reported below), but I slowly recovered completely over two months.  The good news is that about 75% of my curve is gone.  The lump of scar tissue is noticeably smaller.  I am calling the treatment a success. The bad experience with shot six was enough to have me not going back for the final fourth round.  But even without that bad experience, I don't think I would go back.  I am happy with where I am now.  So the stuff can work, guys.  Just be warned:  it can have dramatic and awful side effects.  Brace yourselves!!

I wish the best of luck to all of you!!  May we all be straight!!

Knight

Thanks for the update and congrats on your success! I hope to join you as a success story before this is over!  I begin round 3 in about a month.

hope4all

I second that biocob, congrats! It's so encouraging to finally hear real world tangible results after waiting so long for some type of solution.  Mind you, not a cure but close enough for now.

hope4all

I had my 2nd cycle of Xiaflex Yesterday and today.  Just like the first time, no bruising at all after the first shot. After the 2nd shot, a totally different story. This time around seems much more swollen and black and blue early on. The doctor told me today to massage the plaque once I get home to help with dispersing the Xiaflex a little throughout the plaque.

I also used my traction device on both days immediately following the shots for a total of 4 to 5 hours on each day with several breaks in between.  I took the tension down slightly so I could handle the discomfort a little better.  it's so swollen now that it barely fits in the hole. I did not use traction in the first cycle and only started back up with traction 4 weeks ago. I'm on 2.5 mg of cialis so my night time erections are great. Tonight should be interesting considering the pain I'm feeling while flaccid.  

Before i received the 2nd cycle yesterday I showed my doctor a before pic of my erect penis prior to Cycle 1 and another taken one week ago. I hadn't looked at the pics side by side until that moment and it was clear there was at least a 10 degree reduction in curve. There was also some increase in girth above the hinged area, closer to the glans. I've heard that bruising is good...that could be something that doctors say to excuse bad placement of the xiaflex...who knows.  I will choose to believe it's a good thing for now and stay positive.

We early adopters are basically lab rats and the more we report our honest experiences to our doctors and more importantly here on this forum the better we all will be.  I lurked on this board for many years before I got up the courage to post. These boards were my sanity and solace when I needed it.

Thank you again for this incredible resource which is also my virtual group therapy session. Cheers.
Hope4all



Ive

Each to their own advisers but we were ordered not to use VEDs until two weeks after an injection.

hope4all

Yeah, thanks Ive. There have been conflicting reports from doctors on whether traction with the xiaflex shots are beneficial and/or dangerous. I don't see an issue with traction since the protocol calls for the same kind of stretching, albeit for longer periods of time. The truth of the matter is, doctors don't really know since there hasn't been enough reported experience yet, and the manufacturer will always err on the side of being overly cautious to reduce their liability, especially here in the States.  I think VED would not be a good idea immediately after Xiaflex has been injected into the plaque, as it might be more likely to leak out of the plaque and not perform optimally. I was only able to use traction today for a couple hours because of my work schedule.

This time around the bruising is contained to the shaft and has not spread to the scrotum as it did last time. My night time erections last night were not an issue. When my erection woke me early in the morning, I did the straightening exercise as prescribed by my doctor.  


Ive

I agree with everything you say hope4all.

My attitude always is go (or not) with what your body tells you. Just would never personally recommend anything to someone else if it went against professional instructions.

CalSF

Everything you guys are experiencing with Xiaflex is normal.  Are any/all of you also on Pentox/Trental?  That's what really helped me...It didn't help until I saw Dr Lue and he put me on two tablets three times a day (so 6 tablets).  It made me feel bad but it got rid of all the calcification and most of the curve!

Titandude

Just finished my 2nd cycle of injections. My first cycle showed little improvement, but so far some improvement with my 2nd cycle. Anyway, I thought I would write about my experience for my 2nd cycle.

After enduring a temporary "Jesus, take me now!" moment while the shots were being injected, I was asked to check in with the lady at the desk in the waiting area. The waiting area was packed full of patients waiting on their appointments. The lady wasn't at the desk, so I stood there for a couple minutes waiting. She finally came out with both arms holding a stack of supplies and papers. I told her who I was and she says, "Oh...you're the guy that had the xiaflex injection today!" Did I mention that the room was packed?

I sheepishly and quietly answered "yes", and looked around the room for smirks. I prefer to keep folks guessing as to why I'm at the urologist's office. As far as I was concerned, she just as well could have taken a bullhorn and announced, "This man has a crooked penis!" After getting what I need from her, I put my head down and quietly mosey out of the room. When I reached the hallway, my childhood instincts kicked in and I ran the rest of the way to my car! I guess I'm still a child at heart!

Old Man

Titandude:

WOW! What an experience! I know the feeling you must have had when it was broadcast all over the waiting room! Now, if it were me, I would have answered this:  "Hey folks, I have a crooked dick and it is all twisted up and I need to get the F~@
Anyway, the above is just a bit of humor for you. I had my first bout of Peyronies Disease at age 24 and later at 55 first bout of ED. Then at 65 had a radical prostatectomy which left me with urinary incontinence and wear a leakage pad each and every day.

Saying all of the above to help you ''get over stage fright'' when it comes to dealing with sexual health problems whatever they may be.

Keep the forum informed of your progress on the Xiaflex board so all here can have the benefit of your experience.

Old Man  
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

nwestguy

Hello all-
I'm 60 years old, have had Peyronies with a pronounced 80 degree curve for about 8 month. I just underwent my 3rd round of Xiaflex, without notable improvement from the 1st 2. I'm getting discouraged. I do the required stretching for about 3-4 weeks post injections ,and have just sent for a penimaster, to add this stretching to my routine. I also take pentox 400 mg twice a day.
Any suggestions appreciated.
Thanks.

LWillisjr

It sometimes takes several to see any improvement. Stick with it for a few more and don't get discouraged.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

nwestguy

Thanks Les-
I wanted to check with those more experienced than I. I think the standard treatment with Xiaflex is 4 cycles. I read one of the postings that a fellow's insurance had paid for more. As we all know, Xiaflex is really expensive. Do others have experience with insurance companies paying for more than 4 treatment cycles? If so, I'd really like to hear how that was accomplished.
Thanks for any input on this.      

Jonbinspain

For those with calcified plaque. I sent an email to SOBI asking about this and received this reply;

"In short, we do not know if having calcified plaques makes any difference to the success or otherwise of Xiapex therapy"

"
This question has arisen before, and I can tell you that we believe that the reason for the exclusion in the trial population was that the calcified plaque might have made the injections more difficult or even impossible. "Effectiveness" was not considered at that time"

It then goes on to say that it is the decision of your Doctor whether Xiapex(flex) is appropriate treatment in your case.

So, they're not saying it won't work against calcified plaque, only that it hasn't been tried.  

BX642

I had my first injection of Xiaflex earlier in the week. I have experienced swelling and tremendous bruising (a lot of black and blue throughout the entire part of upper shaft). I have woken up several times in the night with pain when experiencing erections. I will keep this post updated with my experience. I have my second injection early next week.

JRB55

Hi. I'm new to this site.  I've had Peyronies for about 4 years and have tried a myriad of treatments including Pentox, Vitamin E, Co Q-10, topical Verapamil, an extender and so on with no success.  I've been looking into the Xiaflex, but frankly am rather hesitant after seeing some of the photos of botched Xiaflex treatments and reading some of the horror stories.  Does anyone know of a doctor in the southeast who has significant experience with Xiaflex and a good track record of success.  I've been to a couple of urologists in the Charlotte area, but they have had little or no training in Xiaflex and very little experience with it.  I don't want my penis to end up as a picture of another botched Xiaflex treatment.

Yeah, I'm pretty nervous about actually going through the Xiaflex regimen.

BX642

I had my second injection this week. Happy to report no bruising and minimal swelling and pain this time. Follow-up in 6 weeks to begin 2nd cycle of injections.

charlie44

[Full quote remove be admin - Please read the forum rules regarding quotes]

JRB, you need to reach out to Dr. Culley Carson at UNC (Chapel Hill). He is a leading expert in Peyronies and close to you/Charlotte.

leonard182

Does anyone know a good Urologist that has a lot of experience and a successful track record administering Xiaflex in northeast Florida? Thank you in advance!

BX642

Dr. Gregory Broderick - Mayo Clinic Jacksonville

northandeast

Wayne J.G. Hellstrom, MD, FACS
Wayne Hellstrom
CONTACT INFORMATION:
Academic Office: (504) 988-5372
Clinic Appointments: (504) 988-2536
Fax: (504) 988-5059
Email: whellst@tulane.edu

JRB55

Thanks, Charlie.  Looks like Dr. Carson is pretty experienced.

leonard182

Thank you BX642 and northandeast!  

charlie44

JRB, he is a leader in this field, plus he does not overdo it with unnecessary (and painful) procedures. He is very good.  

Strippedmanhood

Just wanted to share my experience with Xiaflex treatment. Let me say off the bat id rather of stuck with the curvature. So I recieved my first injections on monday, all went well little bruising but nothing different from Verapamil injections. On wednesday I recieved my second round of injections at 5 pm at Dr. office. At 10 pm I got up to go to bed and somthing ruptured inside my little guy. Blood started filling him up to the size of an eggplant by the time I got to hospital. Had to go to ER cause the pain was so intense. They brought me rite in and gave me 2 shots of morphine which had no effect on the pain. Nurse said pain meds wont block it because its such a high degree of pain. Just shy of me passing out over it.  They gave me a quick ultra sound and confirmed it was all blood and liquid. Dr. Then gave me a shot of dilaudid which helped and decided to drain my dic. Yes drain my dic. 2 needles later and the fluid/blood shot out all over the nurse. After draining a massive amount of fluid I finally felt a huge relief. Stayed at hosp that night but it wasnt the hosp my Dr. Goes to. Next morning the hosp urologist evaluated me and said I have to go see my Dr. That did this so he can give treatment. Oh forgot to mention my little guy was wrapped in gauze. Got released from hosp and went straight to my Dr. Who i explained what happened to. He unraveled the gauze and my penis started to fill back up with blood again 😩. He rewrapped it real tight and said its a hematoma which is not uncommon. I decided to stay at his hospitl which was rite next door for 2 night just because it gave me a sense of comfort in the event somthing else goes wrong. Now im home and has been 2 days so far. Still wrapped up and my nuts are like a grapefruit not easy to get around thank god my fiance is a godsend and helps me alot. I see some improvement in bruising and swelling but my Dr. Said its gonna be a full month or more to be back to normal. I just pray I dont have complications later though Doc said I wont, who really knows. Ya know if ur a man a real man, u know that we can break our arm, leg, etc but when u injure ur manhood(penis) it breaks your spirit and really makes you depressed. I hope this helps out ppl who are considering xiaflex treatment. I have heard that it DOES work for peyroines but with obvious side effects. Good luck and god bless to all.  

Pfract

Outch! those are some serious side effects there... shame it happened such a thing, but indeed hope for the best; there might be a chance. Is the doctor you go to, a reputable one if i may ask?

Crooked_Stick

Yes, really sorry to hear about your experience with the Xiaflex. It would really be helpful tp the group tp know who your doctor is and/or how much experience he has administoring the shots. Also if you can tell us a bit more about your particular case with respect to plaque size, location and degree of bend. Also where was the ill fated shot placed on your penis. Thanks so much and hope your recovery is swift!


Crooked_stick
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!

Lucketts


Yes, many thanks for the factual description of what occurred, and we all hope that things return to normal -  no- that things get better than normal.

Odd that the first shot was fine, but the second one set it off.  Was it placed in a different area?

And like the others, it would be most appreciated if you could tell us who was the doctor you went to for the shots.

charlie44

I had a similar issue which I documented in a separate thread. My first round of two shots went great. You could not tell anything happened at all. The next round I had my first shot, and my penis swelled due to bleeding, but the swelling was only about a half erection, nothing like the poster below. I went back for my second shot the next day but knew I would not get it due to my condition. My doctor said it was due to the fact that I probably was not putting pressure on the injection site right after the shot....i.e...i was pressing in the wrong area for 15 min after the shot.

We'll see next time (end of Dec.) if thats the case as I will be very focused on pressure at the injection site. BUT, as others have mentioned, it was very odd for the first round to be basically zero issue, and then have a bad time the next round.  

Strippedmanhood

So went back to my Doc today. I was scared to have him take off the gauze but was happy to see the swelling went down tremendously color is already coming back as well. Pain is still significant.  My Dr. Couldnt believe the healing results. He told me it was most likely a blood vessel that ruptured but we wont know for sure untill he can do a full exam when its healed better.  The Dr. I went to was Dr. Hendricks he has done xiaflex treatments before and just recently before treating me he treated 2 other guys with good results. I guess hes as experienced as one can be considering its only been out for a few yrs now for  Peyroines.  Im just happy its starting to look better gonna be a while yet untill my little guy is fully healed and to see if there was any long term damage which Doc thinks there wont be but who knows.  

Pfract

If if is confident, at least you have some peace of mind. Best of luck!

Lucketts



Our bodies have amazing healing powers.

Thanks for sharing your experience and name of your physician.  Sounds like he's had good success in the past, and that this was just an anomaly.

Let's hope that your problem totally heals.  The fact that you're heading north so fast is an excellent prognosis for a full recovery.

Strippedmanhood

So its been 44 days since my original post and my terrifying xiaflex incident. Well, I am happy to say im pretty much fully healed. Everything went back to normal. My little guy works just fine. Thank God... Still have a slight curve but way better than before not worried about it. It was a long and mentally challenging recover still ongoing but feeling much better about how everything. In conclusion I would say xiaflex works but be prepared that their could be serious side effects. Also make sure you do your research on Dr.s the injection must be done with perfect accuracy. Any questions feel free to ask. Take care and good luck...

Mr. Peckerwood

Has anyone's curvature gotten worse after Xiaflex injections?  I am about one week out since my Xiaflex treatment and the curvature of my erection has gotten worse than before I had the Xiaflex treatment.  My doctor told me this is a normal thing a week in and to continue with modeling but I'm looking for others experiences and opinions on this.

Thanks

Curvature15

Yes mine did. I had two rounds and my curve rapture worsened and Dr. Lue stopped. Said I was his first to ever have that happen.  He thinks it's because I'm still in the Active stage.

lukewill

Hi can i ask guys who've had xiaflex done - does this help with the hard flaccid state of the penis - or does that remain the same (for those who suffered with this too)?

Meduza

Hi, Guys. Can anyone help me with one thing. I have Peyronie's. Now i start making verapamil injections. Im interesting, may I buy xiaflex, or xiapex somewhere in EU and bring it here to Russia to start treatment. What about prices. Is there any online store or somthing.

james1947

Meduza

I don't know where to buy Xiaflex or Xiapex in Europe, but I am proposing you to read on the forum as much as you can regarding Verapamil success before starting the Verapamil injections. At least you will know what to expect.

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

martin23


Hi,

Is Xiaflex recommended in the acute stage as well? I have been diagnosed over 3 months ago.  

Willywonka

Meduza
I would discourage you from trying to source Xiaplex/flex and then using it and with an inexperienced doctor. I read a few unhappy stories on this forum about these injections going wrong, and I strongly suspect that it's not just a Xiaplex issue, but a doctor skill issue. Unless the doctor has many years experience of operating on Peyronies plaque, I wouldn't use him.  I and others have had good results from Xiaplex injections.  

lukewill

Quote from: Meduza on March 21, 2017, 04:27:03 PM
Hi, Guys. Can anyone help me with one thing. I have Peyronie's. Now i start making verapamil injections. Im interesting, may I buy xiaflex, or xiapex somewhere in EU and bring it here to Russia to start treatment. What about prices. Is there any online store or somthing.

DO NOT do this without an experienced doctor - or you may open yourself up to a whole other world of pain metaphorically and physically