Summary of 1st Dr visit, expert who works with Dr. Lue, Xialflex injections

[norcal1970]

Dr. Genevieve H. Sweet, M.D. is the local Peyronies Disease expert in the Sacramento northern California area for Sutter Health.  She treats 5-10 patients a day for Peyronies Disease and communicates with Dr. Lue. and the main remedy is Xiaflex.  She said surgery is barbaric and only done in extreme situations.

Summary:
Once the plaque is finished growing (is this considered the acute phase??)15% of patients bodies cures themselves and restore back to normal!!!!   Fingers crossed.  LOL
Vitamin E and Pentox is what was considered basic protocol.  I mentioned CO Q10, Ubiquinol, Acetyl L-Carnitine, L-arginine and she shrugged it off, eh.  
She said Pentox doesn't do much and its a hassle to take 3x a day but she gave me a script.  
Doppler ultrasounds are a money grab and does not recommend them.  Plaque is easy to identify by touch.  So no doppler ultrasound.
Please note: this is a western trained Dr.  they are like robots for the pharmaceutical industry.  She is just regurgitating what western medicine is forcing down her throat.
I believe a lot of what I read on this forum because we are in the trenches fighting this war.  She is a female and does not have a penis.  But she was sincere and giving me the brass tax which I can respect and she has treated hundreds if not thousands of patients for Peyronies Disease so I consider her an expert.

Why plaque forms:  your body attacks the micro trauma like a record on repeat and just keeps building the same hard tissue.  Once it begins there is no stopping it until it finishes.  Normally your body comes in and restores any damage without making plaque and goes on its way.  Once the body finishes making the plaque 99% of the time the Peyronies Disease is done and what you have is what you have, its not an ongoing thing.  I think I have a genetic predisposition because I have the same type of hardening in the tendons in my palms and I showed them to her and she said yea, its basically the same thing but you don't see uncle Frank discussing it at thanksgiving dinner.

Once there is no changes to curvature/hour glassing etc for six months schedule a visit where she injects medicine into my penis to make is SUPER hard and then take measurements and markings of the curvature to provide to the insurance company so I get coverage for xiaflex.  She said they get about 99% insurance coverage rate due to their meticulous process.  Xiaflex aint cheap in the USA.  

My plaque is right at the head and I have about 40-45 degree curve and its starting to hour glass and my head is shrinking when hard.  I've lost about an inch in length and girth is shrinking too where the plaque is.  I can live with all that.  Its the pain that I want to get rid of.   She said that Peyronies Disease pain responds well to ibuprofen and take it an hour before sex.

Xiaflex is not going to restore the penis to where is once was before Peyronies Disease but it softens the plaque, reduce the curve and makes sex a lot better experience.  

The process is two injections and then a couple months of stretching and manipulation.  And this goes on for up to six sessions.  A lot of the times patients get enough relief with 1 or 2 sessions that they stop treatment.  Its all depends on the patient and quality of life.  I spoke with Dr. Lue and he has treated over 4000 patients with Xialflex.  

I will circle back in May/June when I expect my penis to be done making plaque according to the Dr. and start with Xialflex.  

Once last thing..  I got some pentox and it gives me the worst heartburn.  I take my last dosage around 8pm after dinner and I get woken up in the middle of the night with the worst hearburn.   Is this common?

[samsung]

Good luck. If you want any advice about what to expect with xiaflex or any tips on wrapping with coband or anything else, PM me. I just finished round 3. It doesn't hurt as bad as you think it does, but it does hurt. A lot. And you won't believe me after the first time you get it, but your brain adapts and you get used to it. It is a difficult process but it is not as bad as your brain is telling you it will be.

[Hawk]

Samsung, Instead of PMing why don't you discuss it on the forum where thousands of others will benefit from the discussion for years into the future?  That returns the support to the forum that you found here.

Once the plaque is finished growing (is this considered the acute phase??)15% of patient's bodies cure themselves and restore back to normal!!!!   Fingers crossed.  LOL

the most accurate thing in that line is the "LOL"

It is had to believe any "Peyronies Disease expert" would suggest that 15% or even 5% of men get restored back to normal.  I wonder if you could have misunderstood her.  Maybe 5% of men improve but even most of those will not be fully restored to where they were.

[TDix]

Well I fell for the whole Xiaflex treatment and ended up with a fracture...NOT due to sex.  So I believe this treatment is a case by case result

[samsung]

You're right Hawk. I just didn't want to lay it all out in this post because the info is available in other posts if you search.

As for wrapping: Search this forum for "coflex" "coband" or "wrapping," and you will find a range of opinions and you'll have to do what you feel is best for you. But in general it is my experience that you need to compress the injection site and wrap your dick immediately after the shot. And leave it wrapped for a good long while. And wrap the WHOLE shaft from base to head. Not just the injection site. If the doctor won't wrap it, do it yourself. If she wraps it too tight and it cuts off circulation, rewrap it yourself after you leave the office. But the point is, as soon as you remove that wrap is when the real swelling will begin. You'll have to play by ear how long you leave yours on for. Listen to your body. I personally did not sleep with wrapping on. I was scared to cut off circulation or roll the wrong way.

Regarding swelling...

Don't be alarmed at whatever happens. It will swell a little or it will swell a lot. You can't predict it. You might even think you have a fracture because the swelling is that bad. You probably don't. It runs the gamut. It could be a little purple at the injection site or your dick could look like a mini eggplant. You might even think it worsened your curvature. My dick bent in 2 different directions and turned black and purple all over with tiger stripes up and down the shaft for 2 weeks.

Point being, it is all in your head how bad you think it is. The swelling will subside after a week or two. This most recent round for me, there was barely any swelling at all.

The only time you should be really alarmed is if you are in extreme pain or the swelling is absolutely beyond "normal." Again, listen to your body. And make sure your doctor is available for aftercare after each shot for a few days. If you have a massive hematoma or something you don't want to present this mess to an intern at an ER. You want an expert who has seen this before. Not that that is likely. Just be prepared.

Also, search for Lyon Legacy magnet. I had good luck wrapping this magnet (size of a quarter) on the underside of my dick underneath the coflex directly against the shaft. My theory is the magnet attracts the iron in your blood and keeps the swelling to a minimum.

Also, keep off your feet for at least 24 hours after each round.

Use common sense. Blood, like any fluid, will pool with gravity. If you are bouncing around, walking, etc. it is going to swell way more.

Lie down in your bed or in your hotel and chill out. Don't walk around for at least 24 hours. The blood will not pool in your dick if you are prone. Or it will pool less than if you are walking around. Use common sense and discretion.

As for traction. Opinions vary widely on this.

Here is what I do....

I don't do anything between shot #1 and #2 (of each round I mean).

After shot #1, leave it alone totally.

After shot #2, listen to your body. But generally, I begin hand traction within 48-72 hours later. I pull it straight out for 30 sec.-1 minute. Then bend it counter to your curve for 30 sec.-1 minute. I do this for 10 minutes total 3 times per day. Back off if any bad pain.

Then I go back to my traction routine in 2 weeks.

Do not engage in VED use during this entire xiaflex process. VED is too much stress on the tunica and can result in fracture.

As for sex, I shy toward the conservative side and do not masturbate for 4 weeks after the 2nd shot.

Can't think of anything else at the moment.