9 months Peyronies Disease; medicine failed; started Xiaflex w/ Dr. Lue this past week

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wtrenton

First post.

I'm a 42 y/o male No history at all of Peyronies Disease or trauma to my penis, and no rough sex. I had a slight congenital curvature, which I know for a fact also runs in the family. No idea how I got Peyronies Disease other than bad luck. Symptoms onset was October 2020 at 41 y/o, in the form of pain any time erect and when having sex. Waited several weeks to see if whatever it was would go away on its own, but went to Urology when it didn't and was formally diagnosed via observation in December 2020.

Compared to many of the other photos on this board, I consider myself lucky. I curve to the left about 15-20 degrees, and up maybe another 5-10. I also have a noticeable indentation in the middle of the top of my shaft, and a fairly big bulge on the backside on the shaft. I have no visible curvature or pain when flaccid. But I have lost length—about 2".

I did not have any erectile dysfunction prior to this disease, nor at the onset, although I do have a history of some premature ejaculation in my 30s and 40s (2-4 minutes or so on average, down from probably 7-10 minutes in my teens and 20s). Uro says that is totally unrelated. My wife and I were watching a movie last night (a week into my Xiaflex) that had a rather arousing scene...but as I sat there watching, I found I was not getting especially hard, and it was taking a long time for any hardness to come. I'm not sure if this is a temporary side effect of Xiaflex, or if it's a new Peyronies Disease symptom I just didn't have earlier. I guess I'll have to wait and see.

Anyway, I have three separate areas of plaque, according to the ultrasound.

I have photos I can share, but I won't be able to until I can figure out where I can upload them to be able to link here in the post.


First pass at treatment: medicine only
My urologist prescribed 1200mg of Trental/Pentoxyfylline to be taken in 400mg doses 3x daily. He advised that 60% of Peyronies Disease patients will find the plaque stops growing and the associated pain goes away after 4-6 months of that dosage. I had zero improvement. At about the 4 month mark, when I had a checkup and told him my pain and was exactly the same as it was months earlier, he referred me out to Dr. Lue @ UCSF for all further treatment.

First visit to Dr. Lue
I had a video visit with him initially, thanks to pandemic restrictions. I lost more than a month because we had to do that first and then wait for his first available appointment. But we had that appointment in late May. He performed an ultrasound and found 3 separate areas of plaque. I guess part of the reason I don't have a severe curve to the left is because I also have plaque on the opposite side, and at the base... So in effect, the penis is being pulled in both directions, and downward; thus creating some buckling and curving both to the left and a little up. All three plaque areas are very thick, and as of this first appointment, the one on the left was the biggest. But, fortunately, none of it was calcified,

He felt the Trental/Pentoxyfylline dosage was weak for my height and weight, so he bumped me up to 1600mg daily, and only twice a day. At this point, I was still not at all convinced the Rx was doing anything, but he said since I'm not having any side effects, it was better to keep taking it in the hope that it was at least stopping further growth of the plaque. He scheduled me to start Xiaflex a few weeks out, and reminded me Xiaflex only deals with the plaque; I will need (and he highly recommended) traction to regain any lost length and undo any curvature. He recommended RestoreX.

All told, my deformity is unsightly to me, but it's probably more psychological than anything; in and of itself, the physical changes have not been a problem to my wife or prevented intercourse, although it does make intercourse actually painful for me.; they're also not especially huge curves. My insurance did approve Xiaflex on the basis of the combined curves in multiple directions being 30+ deg, plus other factors. But even leaving the curves and buckling aside, the pain is a problem and nothing seems to be helping it. The hope is that getting rid of the plaque will help stop the pain, too.


First 2 Xiaflex injections - last week

Dr. Lue did not do an ultrasound this time. He injected Viagra to help identify the plaque areas by hand, and marked them. He found the biggest plaque area on the left was now twice the size it was only 3 weeks earlier...so the plaque is obviously still growing (hence my continuing pain), and the Trental hadn't done much if anything to stop it or help. With the size of it, he also said he would not be able to treat all 3 plaque areas at once; just one at a time. The big one alone would require 5-6 injections.

After the Viagra, he injected me with the numbing agent. I found this to be the most painful part of the process. With my having a relatively low tolerance for pain, he also had to inject a lot of it to get me to a point where I didn't feel anything. Following that, he proceeded to inject the Xiaflex.

Had the first injection early in the week and a 2nd one late in the week.

After the first injection, there was mild bruising, swelling, and a decent amount of pain (more significant tenderness & discomfort than steadily painful).

Dr. Lue's strategy for dealing with those factors is to "chuck the chicken", and yes, he's funny, and yes, he has a flyer of instructions with a chicken on it. So a minimum of 3x per day following the injections, I'm supposed to grab and squeeze the penis as much as I can tolerate it for 10 minutes in an effort to forced blood flow back out of the penis and help ease the side effects — the swelling especially. This actually did work pretty well following the first injection.

The 2nd injection was much worse. It was more painful for whatever reason, and the aftermath was MUCH more swelling and bruising. Almost the entire penis turned purple. I even got some bruising on the pubic area just above my penis. The swelling and tenderness was also much more pronounced, but chucking the chicken helped keep it mostly at bay. I took 800mg of Ibuprofen on a regular schedule too, in the hopes it would help lower any swelling and pain. It helped enough to remain mostly comfortable.

By 2 days after the 2nd injection, the swelling was completely gone. The tenderness was still there. And the purple bruising down about half.

My next session of 2 injections (also both going into the big plaque area) will be in 6 weeks. I've been ordered to have no sex for the first 4 of them. 6 weeks after that next session will be one final round of 2 injections into the big area. After that, 6 more weeks, and then we can start the Xiaflex on the other two areas of plaque.


RestoreX Traction

Today was the day I am supposed to start doing traction—2x daily for 30 minutes each. I bought the RestoreX direct from the company for $499 + shipping, on Dr. Lue's strong recommendation. For those curious, my insurance did not cover it at all. It's too new. I was at least able to pay for it using pre-tax dollars out of my FSA.

I've watched the company's videos and read the instruction manual. Maybe it's just me, but I find RestoreX fairly confusing to setup and operate. I think I got it to a point where it's setup correctly, but using it is monumentally challenging to actually use. Perhaps I'm just not doing something right? I can't seem to fit my head into the clamp. I've adjusted the clamp height to its highest setting (there are only 2), but I still only get the clamp to lock on the first notch — and it is NOT comfortable at all. I'm not sure I'm even engaging the stretching mechanism thingy correctly — the white lines are showing and it's stretched, but I'm not at all confident I'm doing it right yet. (I haven't even started trying to figure out the angled usage.) But either way, even at the top height setting, the discomfort is significant and it BARELY fits there on that first notch. I was only able to do 8-10 minutes before I had to take it off.

I'll keep trying I guess. But if anyone has any suggestions or videos that show how to use this contraption, I'm all ears.
43 y/o
Peyronies Disease diagnosis Dec 2020
Numerous plaques; curve up&left combnd. 30 deg.
7 mos of Pentox did nothing
Completed 10 Xiaflex injections w/ Dr. Lue, Feb 2022
RestoreX limited use
Curve almost entirely gone
Lost length 1-3/4" still trying to restore

Benraycamp0

Welcome to the forum! Glad you decided to join in and ask your questions.

Thanks for sharing your story so far!

Please read through our Survival Guide as it has a ton of useful information about this condition -  https://www.peyroniesforum.net/index.php?topic=3180.0

Could you please take a minute to fill out your signature line? It's hard to remember your case details out of 20,000 members. You can find instructions here - https://www.peyroniesforum.net/index.php/topic,10819.0.html

If you would like to post pictures, please post them on imgur.com and link them to your post!
26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Hawk

Trenton

Welcome to the forum.  You are fortunate to be in excellent hands with Dr. Lue and found the only recognized English forum on the internet to give a voice to Peyronies Disease and ED patients.  You are among members who understand and who have a lot to offer in your battle.

I think you are doing exactly what you should by following Dr. Lue's advice.  I would take the supplements recommended in the survival guide.  Read it carefully from beginning to end.

Please fill out your signature line as Benraycamp  
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Mikel7

Welcome Trenton! You are among friends here and will find a community that cares and understands.  As Hawk stated read the survival guide and give the supplements a go - they can't hurt.  Search the forum as it contains a wealth of knowledge of guys who have been through similar scenarios.  Don't let depression and worry get a hold of you.  If your wife is involved it can be very comforting emotionally as I know this for myself.
Lump 4/2020, age 62 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

GaussRifle

You mention that after your first xiaflex shots you had trouble getting hard... I want you to know that is completely normal,  after my first xiaflex rounds I couldn't get get decently hard for 2 to 3 weeks. It all comes back in about 6 weeks by the time you are ready for next shot.
26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

wtrenton

Quote from: GaussRifle on July 06, 2021, 06:53:43 PM
You mention that after your first xiaflex shots you had trouble getting hard... I want you to know that is completely normal,  after my first xiaflex rounds I couldn't get get decently hard for 2 to 3 weeks. It all comes back in about 6 weeks by the time you are ready for next shot.

That's reassuring, thank you. A bit discouraging I'll be going through Xiaflex injections for a total of at least 36 weeks, and I assume I will have little if any sex during that time. But hopefully this is all worth it in the end. I imagine I'll never get back what I had before, in either function or length. And I am actually okay with some curvature especially if it stopped where it's at right now. Mostly I want the pain gone, and to eliminate or at least reduce the chances this will keep spreading.
43 y/o
Peyronies Disease diagnosis Dec 2020
Numerous plaques; curve up&left combnd. 30 deg.
7 mos of Pentox did nothing
Completed 10 Xiaflex injections w/ Dr. Lue, Feb 2022
RestoreX limited use
Curve almost entirely gone
Lost length 1-3/4" still trying to restore

wtrenton

So I promised to share some of the before/results once I figured out how to post images. So here are a few of them.

I do not have a good before photo from prior to start of Xiaflex last week. I took a few at the doctor's suggestion, and on different days as I was finding the extent of curving varied a lot, not just on how hard I was. Some days it was much more than others. The day I started Xiaflex, it was quite mild. But as I mentioned above, my question here is less about curvature as -- so far -- I'm pretty lucky to have a mild case. My treatment goals are more to (A) eliminate the serious pain when erect that Trental/Pentox has done nothing to help; and (B) get rid of the damn plaque as soon as I can because it's obviously still growing RAPIDLY even after months of Pentox treatments, and hopefully help reduce or eliminate the chances of more plaque growing and the curvature getting worse.

BEFORE -- START OF XIAFLEX 1ST TREATMENT
Viagra injection to mark locations of the plaque. First photo marks the worst of them; over an inch long and very thick. Uro estimates at least 5-6 injections just for that one.



POST 1st INJECTION (a couple hours later)


POST 1st INJECTION (24 hours)


POST 2nd INJECTION (4 hours later)


POST 2nd INJECTION (24 hours later)



Almost 1 week later, and the vast majority of the bruising is gone. There's still some around the head that is painful to the touch and causing a little bit of swelling, but I think it'll all be gone by the weekend. As mentioned above, there are some residual problems getting hard that seem to be common after.
43 y/o
Peyronies Disease diagnosis Dec 2020
Numerous plaques; curve up&left combnd. 30 deg.
7 mos of Pentox did nothing
Completed 10 Xiaflex injections w/ Dr. Lue, Feb 2022
RestoreX limited use
Curve almost entirely gone
Lost length 1-3/4" still trying to restore

Kobegianna

34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections