Peyronies Society Forums

Peyronies Disease TREATMENT Discussion Boards => Xiaflex Injections => Topic started by: buscador on November 05, 2015, 03:39:57 PM

Title: Modeling after Xiaflex
Post by: buscador on November 05, 2015, 03:39:57 PM
Hello, the Xiaflex Patient Guide says that patients should perform (one to three days after the second injection) the following at-home penile modeling activities for the 6 weeks after each treatment cycle:

1-Penis stretches: Grasp the tip of your penis with the fingers of one hand and hold the base of your penis with the fingers of your other hand, gently pull your penis away from your body to its full length, hold the stretch for 30 seconds. Do this stretching 3 times each day, only when the penis is NOT erect.

2-Penis straightening: If you have spontaneous erection, not related to sexual activity, attempt to straighten your penis by gently bending the shaft in the opposite direction of the curve, but not so forcefully so as to produce significant pain or disconfort. Hold the penis in this more straightened position for 30 seconds. Do this straightening ONLY ONE TIME each day. If you do not have a spontaneous erection, do not attempt the penis straightening activity.

Please, could some of the forum members that had done (or are doing) the Xiaflex treatment, report on this topic if they have followed exactly that modeling activities, or have followed a different daily routine (in that case, describe it)?
Could you also report your improvements, and if you got in-office penile modeling (describe procedure)?

The purpose of this topic is to find out if there is any significant relation between the kind of modeling performed (also the timings) and the curvature reduction.

Thanks a lot in advance, and sorry for my English.

Title: Re: Modeling after Xiaflex
Post by: Head Up on November 21, 2015, 06:01:54 AM
After my first round of shots, I did modeling along the lines of what the xiaflex guide recommended. I did have curve reduction upon measurement before round 2. After round 2, I had a pretty bad reaction and didn't do any modeling once the pain subsided. Low and behold, no curve reduction after round 2. So here I am after round 3. The farther I get away from the last injection date, the more modeling I perform. I'm probably doing 5 stretches for longer than 30 seconds per day and will do the erection straightening when the non-spontaneous erection occurs. You just have to be careful not to overdue it. Modeling to the max though may produce the best results.

And the modeling isn't just supposed to be stretches and straightening. My curve is to the left and up, each probably around 30 degrees. After round 1, the in-office modeling I received was basically a strenuous stretch in the exact opposite direction of the curve. I'm trying to do this as much as possible because maybe that's why I had good results after round 1.

I've read in a few posts here that some guys will do aggressive modeling and have actually felt the plaque split/break apart leading to much better results. My advice? Do what your body can tolerate, and don't overdue it.
Title: Re: Modeling after Xiaflex
Post by: james1947 on January 11, 2016, 10:59:18 PM
Posted by Dusty1234
I would urge those who are about to do it to do several things.

1. Get it done sooner before the plaque calcifies. It feels like my doctor sticks a needle in a bone inside of my penis when I get the shot. Imagine that. It's awful. The softer the plaque the better.

2. Don't have sex too soon after shots. Listen to your body.

3. Wait til most of the swelling has gone down to start traction, modeling, and VED.

4. After your shots, have your doctor wrap your penis from tip to base but not so thought that you can't pee. Leave that in place for at least 24 hours and when you take it off have another wrap ready to go. Quickly clean it and then stretch it out to re-wrap it immediately. The medicine is weird and causes so much awkward and potentially painful swelling. Leave it on for 24 hours! Trust me.

5. Have faith. It may look worse before it gets better but in a month it may look an incredible amount better. Be patient. Listen to your body. Don't overdo it.  Be aggressive but smart in your therapy. If something starts to hurt, stop it.

6. I wish you all the best of luck. It does get better. My penis is now working as well as it did before it started.

One final comment. When this began almost two years ago, I had two plaques getting progressively bigger. One was at the tip, which I still deal with; the other was about halfway up my penis shaft. It was always smaller, but it was definitely there. We never injected that one but since my first round... That plaque has completely disappeared. Nobody can explain that, but the other one wasn't going anywhere so I'm glad I've kept doing this. All in all, do whatever you think is best and try to avoid surgery at all costs.
Title: Re: Modeling after Xiaflex
Post by: gringoviajero on January 13, 2016, 09:56:05 PM
Hi James, glad to see you're still active here.

I'm contributing because today I had my 4th injection, #2 of the 2nd cycle, and there was much discussion with Rafael Carrion that may be of interest to members.  I have soft plaque, which I once thought an advantage.  I now realize it is not.  It is difficult for the doctor to know where to put the needle.  Carrion said my plaque was atypical: not hard but very dense and covering a very large area, the entire side.  He said it was like having an Achilles tendon in the penis.  Yesterday was shot #3, and he was very aggressive.  Today, for the first time, he gave me a local anesthetic and then he really went to town, fanning out the injections over a broad area. 

As you know from my other posts, I injected myself with a bromelain compound last year with very good but temporary results.  This experience aided the doctor, because we could discuss the mechanics of getting the needle in the right spot.  Today was the most difficult and painful day, but he's optimistic that a good share of the drug made it's way into the plaque.

So for those of you with soft plaque, you will have a different path to take than those guys with a lump, a "target."  And as for modeling, we had a lengthy discussion of the protocol.  Because so much was at stake in getting FDA approval, the modeling protocol was intentionally very cautious.  The fact that only 5 guys had ruptures out of 1000+ tells you something.  And as for my question, raised in another thread, of the activity period of the enzyme: it is indeed active from the outset.  These two facts, that the drug is immediately working when it enters the body, and the modeling protocol is extremely conservative, will help you decide how you approach your modeling.
Title: Re: Modeling after Xiaflex
Post by: james1947 on January 16, 2016, 11:01:46 PM
Just from time to time Gringo :)

Title: Re: Modeling after Xiaflex
Post by: Jimbruski on February 25, 2016, 12:25:22 AM
Hello All,

A newbie, and have spent the past three evenings reading posts and threads.  I've read some very useful and meaningful things regarding peyronies.  I'm guessing that this is the best group to ask my question of....

History:  Have had peyronies for over a year and most recently finished my second round of Xiaflex treatment along with the instructed modeling.  I actually did more modeling than my urologist suggested.  I have seen no improvement at all.

My peyronies was left curved close to 90 degrees and remains the same today.

I was referred to Dr. Lue at the UCSF Medical facility for further treatment with my urologist last words being,"probably reconstructive surgery" ringing in my ears.

I'm not scheduled to see Dr. Lue until July 2016.  I spaced my appointment out a ways so that I might have time to gain as much insight into this disease as possible.  Fortunately this sight has helped me immensely, but still,  from the forums perspective, and experience, is surgery really my next option?  I've read the posts on traction devices, oral medications and VED's but really am not sold on any of those being able to improve my situation any more than my Xiaflex injections and modeling.  Am I mistaken here?

I hope this post is in the right category and certainly welcome your responses and experiences.

Thanks for your help,

Title: Re: Modeling after Xiaflex
Post by: james1947 on February 25, 2016, 03:53:20 AM

You have said that:
Have had peyronies for over a year and most recently finished my second round of Xiaflex
In my opinion, your uro started you on the Xiaflex too early. In most cases within one year you didn't past the so called "Acute state"
Again in my opinion, try VED, Pentox and low dose Cialis before running to surgery.
Dr. Lue is one of the bests according to the forum

Title: Re: Modeling after Xiaflex
Post by: Jimbruski on February 25, 2016, 10:43:03 AM
Thank you for your reply.  And thank you for being straight forward with your opinion.  This is exactly the type of answer I was hoping for.  It is also, as I said, why I didn't go directly to surgery.  I will certainly talk this over with my local uro before seeing Dr.Lue since I will likely need a persc for the Pentox and Cialis.

Title: Re: Modeling after Xiaflex
Post by: james1947 on February 25, 2016, 01:05:27 PM

Get a prescription for VED also, they are expensive.
Not for Peyronies (not approved by most insurance companies for Peyronies), ask the VED for severe Erectile Dysfunction you have, even if you don't have  ;)

Title: Re: Modeling after Xiaflex - homemade VED
Post by: gringoviajero on February 25, 2016, 03:58:39 PM
I made my own VED quite simply and inexpensively.  Click on my name to see my other posts, and you should see the one where I explain what I did.  Or you can p.m. me, ORRR I can stop being lazy and explain it all again here.

Later – I found it:

By the way – For you guys wanting to try a VED but hesitant about the expense, I've made a very good one cheaply.  Get an aquarium vacuum tube; they come in 1.5", 1.875" and 2".  Get a VacuuVin manual wine sucker and stopper.  The stopper fits the tube nozzle perfectly.  The tricky part is finding a rubbery material and glue that will stick it to the tube mouth to form a padding and seal.  I used a Theraband latex exercise band.  Rubber cement may work, but you may have to experiment with glues.  It's very cheap and works fine.  I've been using mine for a year.

Message me if you want more info.  Costs pennies.
Title: Re: Modeling after Xiaflex
Post by: Jimbruski on February 25, 2016, 05:22:58 PM
Thanks gringoviajero!  They are expensive so this may help out.  How do you gauge the vacuum quantity?

Title: Re: Modeling after Xiaflex
Post by: gringoviajero on February 25, 2016, 05:48:36 PM
If you mean circumference of the tube: you'll want it a little bigger than you are.  1.5 and 2" are the most common sizes.  It was a Goldilocks thing; one was too small and the other too big.  Eventually I found the 1.875" at one of the pet chain stores.  I was looking for 1 3/4" but didn't find it.  The 1.875 has worked out fine though.  It's strong enough to hurt you, so no worries on suction power.  You'll have to toy with making the rubber gasket.  I used 2 layers of the Theraband latex, cutting them out like a cookie cutter.  You'll figure it out.
Title: Re: Modeling after Xiaflex
Post by: Jimbruski on February 25, 2016, 05:57:44 PM
No, I mean the amount of vacuum (suction) that this supplies.  VED's I've viewed have a vacuum/pressure gauge attachment so that you can monitor and not overdo the vacuum pressure and cause injury.

Title: Re: Modeling after Xiaflex
Post by: gringoviajero on February 25, 2016, 07:54:55 PM
Don't worry about that.  Just use your sense.  You're not going to do any damage unless you pump it to the point where it's very painful, and you're not going to do that.  If anything puts you in much pain – VED, stretching – you're overdoing it.  Just trust your own judgement.  But I will say that without Xiaflex, using a VED alone, will probably have little effect.  My doctor agrees that, in the absence of anything better now, the only way to attack this thing is chemically.  You could hang a bowling ball from a tendon or cartilage and you won't see much lengthening.  It's tough stuff.  That's why I risked the bromelain experiments.  (See my other posts on bromelain.)
Title: Re: Modeling after Xiaflex
Post by: Jimbruski on February 25, 2016, 09:48:28 PM
Thanks gringoviajero.  I'm beginning to understand this whole concept of VED and injections.

Title: Re: Modeling after Xiaflex
Post by: itsme on February 26, 2016, 05:04:40 PM
Jimbruski, I`ve been talking to Egydio, who is known for have improved grafting technique and he told me that the surgery won`t restore your tissue like it was before, he even told me some people use artificial fill on penis tunica after surgery, for those with pronounced hourglassing, which I would never to do even if I needed to. I`ve been reading this form for 7 months and Xiaflex seems to be really working for many people here. Try to take some time like james1947 told you, while taking pentox and Vit E and then you try Xiaflex again again to get trained with VED. I wish we had Xiaflex in Brazil, but I called them and they will not be selling it here so soon. Among other reasons I am even studying to get into the federal medicine college now, with that I hope I will be able to afford what I need to if I have more problems in the future and even take the Xiaflex treatment. Good luck buddy! ;-)
Title: Re: Modeling after Xiaflex
Post by: Jimbruski on March 02, 2016, 03:47:40 PM

I just saw your post.  Thank you for the additional info.  I'm going to go ahead and try your and James1947's suggestion.  Do I need a prescription for Pentox?

Title: Re: Modeling after Xiaflex
Post by: gringoviajero on March 05, 2016, 08:55:23 PM
Here's something that will scare the bejesus out of you.  I returned this afternoon from Tampa General Hospital where I had to undergo emergency surgery for a fractured penis.  Following use of my VED, including the lateral vacuum, of which I wrote here on the Forum somewhere, 48 hours after my injection, I developed a large lump. I finally went to my G.P. and he diagnosed a hematoma, but did not think a fracture.

However my Peyronies Disease doc in Tampa insisted I go to the ER for an MRI to play it safe.  I live 85 miles away but made the drive at his insistence.  They took me right in and scanned.  "Fracture" was the clear indication requiring immediate surgery.  I nearly fainted as it could mean lifetime impotence.  The MRI showed a 1.5 cm tear in the tunica.  They put me in surgery right away.

When I awoke, the surgeon said I was a very rare case and the team of 3 doctors were amazed to find after "degloving" me that it was indeed only a hematoma.  All indications on the MRI pointed to a tunical rupture, however.  My relief was nearly as overwhelming as my diagnosis before surgery.

The mutual agreement is that I began VED use too soon after injection.  All I really did was rupture a vessel, but it could have been much worse.  I'd discussed the "lateral vacuum" idea with the doctor, and he thought it a novel approach.  I think the only problem was that I didn't wait long enough to try it.  Now I have to forego all modeling for a couple of weeks, which unfortunately may take me outside the Xiaflex "window of opportunity."  This may also mean I won't get my 4th and final cycle.  But at this point I'm just glad to not have a fractured penis.
Title: Re: Modeling after Xiaflex
Post by: Lucketts on March 06, 2016, 09:36:14 AM

Understandable how you would want to start VED right away, since we think that the Xiaflex is most active early.  I guess next time you wait the 2 weeks bef any VED and traction  Real glad to hear that it was a false positive and that you're okay.  Must have been real freaky.  I imagine though that it is safe to be a little more aggressive in hand modeling than the protocol allows  After all, the uro really yanks and bends it during the in office modeling, just 1-3 days after the second injection
Title: Re: Modeling after Xiaflex
Post by: gringoviajero on March 06, 2016, 10:16:24 AM
You're absolutely right; precisely my point. My carelessness doesn't alter the facts. The doctors are told, or already know themselves, that strenuous modeling is necessary to effect change. The protocol was designed to win FDA approval as quickly as possible. That means minimize any negative events.

I've seen photos of my degloved penis. How many guys can say that? Creepy! What we now know happened is what I suspected at the beginning: the suction I applied to the side, where my indent is, to pull it out, puckered the skin and broke a vessel. Blood pooled and was trapped in the space between the skin and Buck's fascia. (It had to come out anyway, so it wasn't unnecessary surgery.) As the cowboy said when asked why he jumped in the cactus, it seemed like a good idea at the time. Even Dr. Carrion thought it might work.  Well, so much for that approach.

And remember it was not VED use per se, it was the application of suction over a small area to the side of the penis. I used a 1/2" PVC pipe fitting attached to a VacuuVin wine sucker. I'd also used the VED normally without a problem.  If I had it to do again, I'd use the VED later, maybe a week after injection, but I think 2 weeks is too long.  And I would abandon the idea of suctioning from the side; it just draws up the skin and not the tunica. The current VED trial in the UK should show something, but again, those guys are playing it very conservatively.  They don't even begin modeling until 2 weeks after injection. I wish some of these trial scientists would get Peyronies Disease and we'd see how they approach it then.
Title: Re: Modeling after Xiaflex
Post by: billy80 on March 13, 2016, 08:28:51 PM
I just completed my first round of xiaflex, and boy is the bruising ugly!!! Pain is minimal, and I am going to start the modeling tomorrow exactly 2 days after the second injection. Couple of questions, did anyone do more then the recommended modeling of stretching(3 times/day)
and the bending(1 time/day)? Also with the bruising I am going to follow the exact rules of no intercourse for 2 weeks, but is there a danger
of rupture if I perform more stretches then recommended. Are Erectile Dysfunction drugs needed after all this is over or do the strength of ones erections stay after treatment. I appreciate the help/info, and am glad I found this site.
Title: Re: Modeling after Xiaflex
Post by: gringoviajero on March 13, 2016, 09:57:48 PM
The answers to your questions can be found on this board and the other Xiaflex boards.  There's a wealth of info here.  Basically, my opinion and that of a number of others is that the protocol is much too conservative and more aggressive modeling is warranted.  Note, however, that I commited an error 16 days ago and paid the price, but you're not likely to repeat it.  Just read through the posts and you'll do fine.
Title: Re: Modeling after Xiaflex
Post by: anewbie on March 19, 2016, 02:15:02 PM
Anyone utilize a traction device, of any type, with Xiaflex, to have more "modeling" ?

If so what are the need-to-knows?
Title: Re: Modeling after Xiaflex
Post by: itsme on March 23, 2016, 02:32:59 PM
Jimbruski in Brazil you don`t need a prescription for Pentox, nor in Canada, by what people say here. It seems that you can get a pentox from an online store, research more through this forum and you will find the website. I have been taking pentox for 6 months now, it improved a little bit. There is a guy here that took it for 2,5 years and claim he is without peyronie`s now. I will try Xiaflexi n the end of this year. But I don`t know in which country yet. I have been wondering about UK, because I`ve heard it is a little bit cheaper there. Do you guys now if there is a best doctor for xiaflex? In which country? Tks.
Title: Re: Modeling after Xiaflex
Post by: Rotis on March 07, 2017, 03:11:55 PM
beside stretching I started to massage the spot that felt soft after the injection quite hard while stretching as soon as i could. It seems to have a great impact, maybe spreading the substance. I had 10 injections and gained 3 cm from the 4 i had lost. The last injection gave me more than half cm. I think I will take two more shots to see if I can gain the rest of what I lost
Title: Re: Modeling after Xiaflex
Post by: usckid22 on March 24, 2017, 04:16:13 AM
Hello All,

How long did you all wait before starting the stretching and modeling. My URO said about 4-5 days. But i still see a little minimal bruising. The swelling has come down though. Should i probably wait a couple more days before i start doing any stretching? I just finished my first cycle (2nd shot) on monday.
Title: Re: Modeling after Xiaflex
Post by: Seanwin on June 09, 2017, 09:22:02 PM
I started a thread with a question about a  sonic toothbrush. I'll re ask here as this might be a better place. I've read somewhere about a guy who used a cheap sonic toothbrush to help break up his plaque. Not sure if it's real or not.

My question is does anyone think that using one when modeling after Xilaflex, would help move the drug around better? It seems that this might facilitate. Or at the least not hurt.

Just looking for advice and dialogue.

Thanks in advance
Title: Re: Modeling after Xiaflex
Post by: NeoV on June 11, 2017, 04:46:56 AM
I wouldn't use the tooth brush or "vibration therapy" with xiaflex, since you might end up removing the enzyme from the area it needs to be. The guy here who recovered with the toothbrush has no evidence that he broke up the plaque, not does he have any evidence of scar tissue since he never got an ultrasound. His theory has some validity if only because vibration has the ability to move inflammation or old blood out of the tunica. This is very important, whether you do it with anti-inflammatory supplements, traction, or VED. MANY men have bending without scarring shown on an ultrasound. This is what I consider pre-peyronie's deformity, which is from hematoma and damage. This will lead to scarring, though in some cases it will diminish or go away if you are lucky. Even if it does go away, the very fact that you have it means you are likely to have it again, and therefore are Peyronie's prone.

My penis has been bending after masturbation or sex since I was 18. This gradually lead to scarring, and it happened again in my late twenties in a different area. Take ANY bending very serious, and just because your toothrbush diminished your pre-peyronie's bending doesn't mean much, even though I thank that poster deeply for his discovery and contribution (no sarcasm here.)
Title: Re: Modeling after Xiaflex
Post by: Seanwin on July 29, 2017, 04:51:57 PM
Started treatment this week. First shot wasn't to bad. Dr bent the needle and said my plaque was incredibly hard. Second shot went well in the office. Three hours later I was so swollen and bruised I was a little concerned. Not going to fret as it is an invasive procedure. Day after is tender but doing better. Will keep you posted as to the outcome. Wish me luck because I've found the perfect girl and hope we can make a go of it.

Title: Re: Modeling after Xiaflex
Post by: Seanwin on August 01, 2017, 09:39:13 AM
Almost a week since my first shot. I'm happy to report that about half the bend is gone. I had about a 60 degree upward bend. Now it's about 30. I did stretching on myself for almost 8 months before this shot. Not really sure if that had anything to do with this apparent success, but it didn't do any damage. I will continue to stretch and am scheduled for my next round in 6 weeks.
Good luck to all

Title: Re: Modeling after Xiaflex
Post by: Seanwin on August 04, 2017, 10:52:21 AM
I was thinking I should have put a little more information about the bigger picture on my situation. So along with the stretching, I have developed a lifestyle change. I lost 60 lbs, got buff and refused to eat anything not healthy. I eat organic as much as I can. When I eat out it's generally a high end restaurant that serves healthy organic dishes. I take CO-Q10, pentox, Vitamins C, B-12, E, Acetyl-L-Carnitine and prescription olmesartan medoxomil for  hypertension. I do a 30 day round of Testosterone supplements with 15 days in between. I workout 4 to 6 days a week. Lifting weights, spin bike and have toned up real nice.
Looking back about 7 to 10 years, I think I may have had trauma to my member doing a position with my partner where she was face down with a wedge under her hips. I would enter her from behind and after thrusting for a while I would start to rock up and down. Rocked her world but bent me pretty good. Not saying this was it, but it sure could have been. I remember being sore afterwards.
So after 2 shots I'm still bent but not as much. I modele 3 times a day and am looking forward to my next round.
My only real vice right now is I drink way to much. Working on getting that down. Having been depressed about all of this that's where I ended up. Drinking to much.
Good luck to all
Title: Re: Modeling after Xiaflex
Post by: AussieDude on April 23, 2018, 08:58:40 AM
OK. So. I do 3 x 30 secs per day of strait stretches, but I usually add a bend (same as a uro nurse would do post injs). Puppetry of the penis stuff! I posted details of my journey so far on the topic Combonation treatments.
Title: Re: Modeling after Xiaflex
Post by: TonySa on April 23, 2018, 09:51:52 AM
has bend decreased w additional rounds of xiaflex?
Title: Re: Modeling after Xiaflex
Post by: Scott99 on May 17, 2018, 05:02:54 AM
I went to John Mulhall at MSC in NYC who is supposed to be good at this.

I've had the condition for exactly a year to the date. My curve wasn't too serve maybe 10-15 degrees but the hinge and hourglass and Erectile Dysfunction was bad enough in my opinion to seek this kind of treatment. I'm 28.

I've read that it can look worse before it gets better. But does the actual healed erection look worse before it gets better? I'm exactly two weeks post second injection. I barely bruised or swelled after the second injection.
The plaque feels smaller and softer but my erection looks significantly worse. The indentations on each side are much deeper. The light bruise that was there after the injection is still there now two weeks later. One of the doctors there said it will change throuout the injection cycles and didn't seemed too worried about this. I will hear from mulhall tomorrow.

I refuse to resort to surgery if Xiaflex doesn't work.

If Xiaflex doesn't work it's basically all over for me.

Someone please help with some info I'm terrified.

Your other similar post was deleted by moderator. Please read the forum rules.
Title: Re: Modeling after Xiaflex
Post by: james1947 on June 18, 2018, 05:50:22 AM

Xiaflex works in most cases, so your chances are good.
Try to be positive  :)

Title: Re: Modeling after Xiaflex
Post by: alec on July 25, 2018, 07:18:13 AM
Does one know how long Xiaflex is softening the plaque? Or in other words, how long after Xiaflex self-modeling makes sense? I could not do any in the first two weeks due to bruising :'-( I am afraid that this compromised the whole effect of Xiaflex.
Title: Re: Modeling after Xiaflex
Post by: sutty on August 02, 2018, 11:46:28 PM
I asked my doctor recently the same question. His answer was that they really don’t know. Personally I suspect it is most effective in the first 3-4 weeks post the shots and that the remaining weeks are for consistency.  Curious what others have heard though.
Title: Re: Modeling after Xiaflex
Post by: TonySa on August 03, 2018, 02:45:16 PM
I’ve wondered the same, after a couple of the rounds I couldn’t apply traction due to pain or injury and did start back but saw no improvement.
Title: Re: Modeling after Xiaflex
Post by: Jfriction on September 13, 2018, 11:58:08 PM
2 rounds of xiaflex, 6 hours of traction a day.... My curve hasn't changed a bit . 😥
Title: Re: Modeling after Xiaflex
Post by: Jfriction on October 14, 2018, 09:37:15 AM
Now I've had 3 rounds of xiaflex. Traction 6+ hours a day. No results at all . My doctor is one of the best... I'm just not responding to treatment.

Title: Re: Modeling after Xiaflex
Post by: TDix on October 14, 2018, 03:09:40 PM
I had the first shot of round two 4 weeks ago, and still am not fully healed.  Haven’t been able to do any modeling as a result and my Dr has decided to discontinue injections.  I hope success to all with this treatment but it didn’t work for me
Title: Re: Modeling after Xiaflex
Post by: tonyode on November 28, 2018, 12:55:57 PM
I am staring Xiaflex in two weeks. I had extensive testing with my urologist who seems to be very knowledgeable about peyronies(works for a major university). I asked about devices to use after the injections and if they helped more than just the regular modeling with hand. He said although there are not studies, he has talked with a number of other urologist as well as his experience, and he said he sees no advantage to using a device over the regular hand modeling.
Title: Re: Modeling after Xiaflex
Post by: tonyode on December 15, 2018, 12:21:21 PM
So I have a question pertaining to the modeling. I am in day 3 after first injection. Left the wrap on for about 36hrs. Took off this morning and although I have a little bruising , there is very little swelling. Injection wasn't too bad, better than expected. Day two is where the pain came. But it was tolerable. Today the pain is much better. Not there unless I touch area of where plaque is. Hurts pretty good at that point. I am supposed to start the modeling this evening. But I am wondering with the pain at that spot if I should start the modeling? Afraid I will cause an injury or something? Thoughts or advice appreciated.
Title: Re: Modeling after Xiaflex
Post by: Bubba dawg on December 15, 2018, 07:47:50 PM
Perfectly normal Tony. You should go ahead and start modeling. Right after my injections the doctor bent and twisted my penis. That was worse than the injection sometimes.  So if he didnt damage it then it cant be damaged lol
Title: Re: Modeling after Xiaflex
Post by: tonyode on December 15, 2018, 08:08:10 PM
Thanks bubba. I did start today. Went well. No pain.But man, the spot where my plaque is, is sore as hell. Can't hardly touch it. Maybe a good sign...who knows!
Title: Re: Modeling after Xiaflex
Post by: Bubba dawg on December 16, 2018, 03:55:31 AM
Yea you are going to have several different penis pains. I wondered if mine would ever work again after I got a hemotoma . Blood pooled in a sack. Penis was black and blue. All swollen and lumpy. Doc really cranked on it after the injection. Then other times I had a burning sensation all night that was painful. But everything quickly healed and on to the next injection. Doctor trying to work that medicine in quickly.  Break up the plaque. Bad news is I am going to need more injection. I am still having trouble getting in her vagina. I can only have sex in the missionary position and her hips are bad so that position is bad on her. She still has to help me get in. All that we go through I want it better than this. Feel like I am pulling my insides out when masturbating. I am straining pelvic muscles. I am much better than I was but not quite where I need to be. This is no doubt a disease that may take long term treatment. I will contact the doctor after new years if things dont improve. I just never softened all the calcified plaque. I never missed the modeling. My wife does not care for sex much anymore . I am just wondering if this is as good as it gets? In the beginning doc said it would straighten my penis. Well it hasn't completely done that. He was really vague. Then he said 4 rounds. The he said he had a patient go 6 rounds.
Title: Re: Modeling after Xiaflex
Post by: kingprof on December 16, 2018, 10:23:10 AM
I think it's quite normal to have the area where it was injected sore for a while. For me, pushing on that area was sore long after I could get an erection without having any pain. Hopefully Tony, you will be the outlier and be done with this thing quickly. However, one thing I have learned from this forum is that it tends to be a long road. I really wish there better treatment options with higher rates of success and far fewer side effects. I'm sure everyone here feels the same. I have to admit, I was depressed coming to this forum after I figured out what I had (before my first URO visit). On the one hand, it's always better to know that you're not alone in something, on the other hand, it seemed there were a lot of stories of people giving up on an important part of life.
Title: Re: Modeling after Xiaflex
Post by: TonySa on December 16, 2018, 10:40:14 AM
Bubba, havenyou considered an implant to straighten the curve?
Title: Re: Modeling after Xiaflex
Post by: Bubba dawg on December 16, 2018, 12:34:34 PM
I didnt before I came to this forum tonysa . I have been reading the stories. Looks like an option if xiaflex dead ends. Still haven't given up hope that a round or 2 more will get me close to where I want to be
Title: Re: Modeling after Xiaflex
Post by: Shane43 on November 10, 2020, 01:04:29 PM
An update from my posts on other threads. After 3 series of Xiaflex injections, I decided to wait on a 4th series of injections due to the increasing complications with each series of injections (bruising was worse, pain lingering longer each time, but no where near the hematoma problems some have had). After two months the plaque seems the same size, but the indentations continue to get smaller and I finally have enough rigidity at the base of the penis to have sex, albeit pretty carefully. So, perhaps this might have healed on its own, but I suspect it is the Xiaflex, perhaps in combination with 25 mg Cialis and Co-Q10 and vitamin E. I have not used traction or Vacuum, and only have done a little manual "modeling" as my urologist didn't think a few minutes of modeling each day would help. I did get myself hard each day for at least 30 minutes (when my penis was no longer hurting from Xiaflex injection). I am fortunate to have a wife who enjoyed helping with that part of my "self-therapy" :). So, update is Xiaflex seems to be working and I will wait longer to see if I get the 4th series or not.
Title: Re: Modeling after Xiaflex
Post by: Shane43 on November 19, 2020, 06:13:19 AM
Jan is simply summarizing what the medical evidence supports. The clinical studies on Peyronies Disease are few and not that well done, not the fault of the researchers so much as limited number of participants and inability to control all of the possible confounding factors. If you look at the reviews of possible treatments and international guidelines for treatments, there is some variation in recommendations but most are similar to the review cited below. I provide the conclusions section and attach the paper. Oral treatments like vitamin E and Co-Q10 are not harmful, and may even have other health benefits, so I take them as well. But there is only anecdotal evidence of their benefits.

Medical Management of Peyronie’s Disease: Review of the Clinical Evidence
Patrick Teloken and Darren Katz

"A great number of medical treatments have been suggested and utilized in Peyronies Disease. Evidence from randomized controlled trial with regards to improvement in curvature exists for intralesional (with CCH and interferon alpha-2b) and traction therapy. Oral therapy has not proven to be effective and due to potential side-effects and costs, is not currently recommended. Topical verapamil with or without EMDA is not recommended and novel topical agents need further studies prior to routine use. An optimal treatment algorithm applying a multimodal approach is yet to be defined. With advances in the comprehension of the mechanisms of inflammation and scarring and the development of new agents, it is expected that more effective treatments for Peyronies Disease will become available."

These two papers (also attached) are a little less enthusiastic about Xiaflex, but seem to simply be noting the uncertainty of how it will work for every patient.

Contemporary surgical and non-surgical management of Peyronie’s disease
Recent advances in managing Peyronie’s disease

This last paper "Minimally invasive therapies for Peyronie’s disease: the current state of the art" (also attached), concludes:

"The optimal minimally invasive therapy for Peyronies Disease likely involves a combination of non-surgical therapies. Further investigation into particular combination therapies, including oral anti-inflammatory agents, CCH, and PTT,
may reveal a synergistic therapeutic effect. Nonetheless, surgery offers the highest success rates for men with chronic-phase Peyronies Disease who desire rapid return of a functionally straight erection."

All of these papers were published in the last 2 years and are from highly qualified medical researchers at very good medical schools. None of them note any conflict of interest with manufactures of Xiaflex, traction/VED, or any other therapies.

They are not saying that the many therapies discussed in this forum do not or cannot help, but that there is no good evidence that they work. I realize that not everyone has access to Xiaflex or is a good candidate for this drug, but it does appear to be the best non-invasive treatment (with reasonably good controlled clinical studies to support it) used alone or in combination with traction.

And from my personal experience, after three series of injections, it has made a very big improvement of my hourglass indentation and penis stability, albeit with some pretty bad bruising and pain, but well worth it.

Title: Re: Modeling after Xiaflex
Post by: Shane43 on November 19, 2020, 06:19:59 AM
Sorry that my above message is a bit out of place on this topic of "modeling", but I thought I would write a more complete response.
Title: Re: Modeling after Xiaflex
Post by: MFPC Trost on August 24, 2021, 09:17:06 AM
Going back to the original post, modeling is absolutely critical to getting a good outcome.  In the original phase IIb study, men who didn't model had no improvement, while those who did experienced benefits.  We have been adjusting our modeling technique over time, and our median improvements with Xiaflex have almost doubled from when we first started.  There are a lot of considerations with Xiaflex injections though to optimize outcomes and minimize complications.  We put together a video on this to highlight many of the things that we've learned since first doing these injections in early 2014. 
Title: Re: Modeling after Xiaflex
Post by: nemo on August 24, 2021, 10:10:11 AM
Dr. Trost, welcome to the Forum, we're pleased to have you join us!

Title: Re: Modeling after Xiaflex
Post by: GaussRifle on August 24, 2021, 11:27:36 PM
We are very pleased to have Dr. Trost with us indeed !

As far as modeling after Xiaflex is concerned, I typically feel scared doing modeling with hand because it’s tough to maintain pressure and apply the right force. Is it reasonable to skip hand modeling as long as you are daily doing modeling with RestoreX twice a day and expect curve improvement  ?
Title: Re: Modeling after Xiaflex
Post by: Bak on September 06, 2022, 05:33:46 AM
I am posting an update about my Xiaflex injections + manual and RestoreX manipulation

This was my previous medical history

Name: Bak
Date: May 16, 2022
Level of calcification (if any): mild/low level of calcification
Result: Neutral
Number Of Shots: 8 (4 cycles of 2 shots each, every 6 weeks)
Doctor: James Kashanian, NYC
Modeling: Self, manual and via RestoreX
Summary: Each cycle was made of 2 injections a week. I had 4 cycles in total, each cycle every 6 weeks. The curvature measurement were made prior the first injection of each cycle, in the doctor office. To measure the curvature, I received a medication (injection) to stimulate erection, and the measurement was made with erect penis.

1. Prior to my 1st cycle the curvature was 55 degree, pointing upward.
2. At the beginning of the 2nd cycle, the curvature had worsen to 65-70 degrees. I also developed a bruise after the 2nd injection of this cycle, but not big deal, it went away in one week with no complications
3. At the beginning of the 3rd cycle, the curvature was 55 degrees again.
4. At the beginning of the 4th cycle, the curvature was 45 degrees. I developed a bruise after the 1st injection of this cycle which then went away in a week with no complications.

I am now waiting a few weeks and doing only manipulation with RestoreX and will then decide whether to continue with more Xiaflex injections or not.

Two months after the end of the 4th cycle my curvature was back to 55 degrees. Basically the same as when I started the therapy - no improvement whatsoever. Furthermore, around the same time, another nodule/plaque appeared on the right side of the tip. The doctor said it may be caused by the use of RestoreX so he told me to stop using it and only do manual manipulation. He suggested Xiaflex injection to dissolve that. I did two more injections on that plaque. The nodule dissolved quickly but it developed hourglass which caused a bending also towards the right (initial curvature was 55 degree upward).

The second injection of Xiaflex within this cycle also caused ematoma and huge swelling. I had intense pain for a week, double checked with the doctor which said it is one of the possible reaction to the medication. Two months after this injection I still have some swelling and pain during erections.

The experience was really bad and, overall, I have seen no improvements with Xiaflex + RestoreX so I decided to stop this therapy which comes with some not-negligible risk.

Be safe guys.