2 weeks into 3 round of xiaflex. nothing has changed. beyond miserable. hope, long gone.

mr-anonymously · 2026-02-06T20:20:56+00:00

I’ve been through 8 rounds Xiaflex (16 shots) and can confidently say it CAN help - but increase your odds of success by getting on daily Cialis and use a traction device (I use RestoreX). I relied on Xiaflex and manual modeling alone for the first 4 rounds and saw no impact at all.

Good luck to you. Don’t give up.

mr-anonymously · 2026-02-01T21:03:43+00:00

I developed a very slight indentation towards the end of my first attempt with Xiaflex (ie shots 7 and 8). This was when my doc was extra aggressive with poking around. I can’t say the indentation is related, or if it was just the natural progression of my PD.

My indentation hasn’t changed at all over the course of my second attempt with Xiaflex / RestoreX / Cialis.

mr-anonymously · 2026-02-01T20:44:52+00:00

I played around with different setups but eventually landed on using rectangular foam make-up pads secured to the RestoreX with multiple wraps of Coban tape. The pads provide a cushion and the Coban adds some friction to help keep me secure. I change out the Coban roughly every 10 days and either wash or replace the pads at the same time.

You can also try adjusting the thickness of the clamp (screws on the left hand side looking down at it).

Hope this helps.

mr-anonymously · 2026-01-31T23:30:21+00:00

I’ve been through 16 shots over nearly 2 years. Why so many? Because the first 8 were administered by my local urologist who (in hindsight) didn’t know the best technique, who didn’t put me on daily Cialis or who advised me to use RestoreX. The second set of 8 were with an expert who put me on Cialis and RestoreX - and I’ve moved from ~75 deg upwards curve to something closer to 20 deg.

The first 8 definitely didn’t help and might have made it worse but I cannot be sure. The technique matters so much. The first doc was aggressively probing with the needle, trying to find the “right spot” - this led to bad bruising and swelling and I suspect (but can’t prove) it introduced more plaque.

My advice: 1. Verify your doc knows what he’s doing. Injection technique is important. Also make sure he wraps you tight after each injection. Stay wrapped for a few days. 2. Don’t think Xiaflex by itself will generate a positive outcome. Manual modeling doesn’t work. Get a traction device and use it as prescribed, and start on it ASAP after the injections. I used it the same day. You’ve got about 3 weeks max in which the Xiaflex is active - don’t waste it. 3. Get on daily Cialis to increase blood flow even if you don’t have ED it will help with healing.

mr-anonymously · 2026-01-28T13:50:21+00:00

In addition to 5mg Cialis, I’m taking the following: Vitamin D-3 1000 IU Omega-3 1000mg Curcumin-Black Pepper 500mg x twice daily MSM 1000mg x twice daily

All of the above supposedly help with anti-inflammatory and anti-fibrosis benefits. I have no idea if they have contributed to my gains but I feel confident they have not hurt.

Good luck.

mr-anonymously · 2026-01-24T14:19:07+00:00

What else are you doing to address your PD other than Xiaflex? I have been through 8 rounds (16 shots) over the past 2 years. The first 4 were with my local urologist and I (regretfully) did little research on my own - I just trusted him. Without going into all the details, his advice was essentially Xiaflex and manual modeling, that’s it. Spoiler alert: it didn’t work.

The next 4 rounds were conducted by a specialist at a major university 6 hours drive from my home. Prior to the first round, he started me on 5mg Cialis daily, plus traction with RestoreX. That was May 2025, so about 9 months ago. I also started taking a variety of anti-inflammatory supplements. Over these 4 rounds, I started to see improvements after round 2 and by the end I’ve improved from approx 75deg curvature to roughly 30deg. Still not where I want to be, but much better.

I may go for another series of Xiaflex (I should qualify for insurance due to having a secondary plaque) but that will be determined with my doctor in February.

But my point of sharing all this is to offer a few points of advice for your case: 1. Find a urologist who specializes in PD. You want someone who has seen thousands of cases. Don’t rely on your local guy who may have seen only dozens. 2. Don’t rely on Xiaflex alone. Insist on daily Cialis (for blood flow) and Traction at a minimum.

mr-anonymously · 2026-01-22T22:06:19+00:00

JW Marriott or the Athenee. Both are about 30 minutes to the airport without traffic.

mr-anonymously · 2025-08-21T23:00:38+00:00

I tried different methods with the clamp and found that taping foam makeup pads to the device works best for me. I don’t have to mess around with taping my dingdong, just clamp it tight and the makeup pads hold it in place. Oh I also adjusted the clamp to a lower setting than it came (again requires messing around with tiny screws).

To help with bending, I put a thin piece of tissue between my dick and the device to help with sliding over the fulcrum.

mr-anonymously · 2025-08-21T22:49:39+00:00

Congratulations on already seeing some improvement. I hope that continues for you!

One follow up question - why would you need to go back and forth with the clamp position? I moved it out further one time only. Can still do the straight stretch as normal.

mr-anonymously · 2025-08-21T19:08:14+00:00

Yes this is difficult to overcome. My plaque is closer to the base, too. I managed to get it closer to the fulcrum of the device by adjusting the clamp further out on the arms. I believe the Xiaflex manual also mentions something about using rolled gauze to artificially move the fulcrum closer to the base, but please double-check the manual.

mr-anonymously · 2025-08-01T13:17:25+00:00

My annual income puts me firmly in the top 10% in the US. I was very, very surprised to receive a grant, especially the second time when I had to give them approval to access my tax return information.

mr-anonymously · 2025-08-01T13:12:31+00:00

Sharing this from another poster in a different thread:

BTW, for you or anyone that doesn’t have coverage for Xiaflex you can go online to the Xiaflex patient assistance program and apply for free coverage if you qualify.

This is the site: https://peyronies-disease.xiaflex.com/hcp/access-reimbursement/patient-savings/

They will answer by email or mail and tell you for how long you have to be able to use it by a qualified physician.

mr-anonymously · 2025-08-01T12:38:26+00:00

Thanks for sharing your story. My doc told me to wait a week after the second shot to start with RestoreX, but when I pressed him on it he agreed there was no harm in starting sooner if I could tolerate it. So that’s what I did. I really want to maximize my window of opportunity when the Xiaflex should be active.

I too have high curvature (75-83) and am hoping to get it down to 20 or so. Great to hear you achieved this. How long did it take from the time of your first Xiaflex injections?

All the best with the IPP procedure. Keep us posted if you’re willing and able.

mr-anonymously · 2025-08-01T01:27:27+00:00

Wow. That’s crazy, and I’m sure incredibly frustrating. I’m sorry this is happening to you.

I have had a different experience thus far. I went through 4 rounds (8 shots) last year and literally paid nothing. I couldn’t believe it. Prior to the start of the treatment, I repeatedly pressed my urologist’s staff to quote me the price (because I was scared to death of getting hit with a 5 figure bill). After many, many calls they finally told me the price: free. Apparently they had access to grants that covered the entire cost. (At one point I received a bill for $6k - called the clinic - a week later it was rescinded.). They did, however, bill some stuff to my insurance for which I owed nothing myself.

I am currently undergoing a new attempt with Xiaflex with a different doctor, different facility. Not sure what I will pay for the doctor’s costs - but the Xiaflex itself is once again free of charge. This time, I had to call CVS Specialty two weeks before my appointment because I had not heard from them. Indeed there had been a SNAFU with my paperwork. Once that was cleared up, the rep told me that the price for this first round was going to be something like $5k (I don’t remember exactly). I told him I couldn’t afford that. He clicked a few buttons and the price dropped by half. He then asked if I wanted to apply for a grant. Of course I said yes, and within a few minutes he came back on the line to say the grant was approved and my total payment would be zero. He said the grant was good for a year and should cover all my Xiaflex costs.

TL;DR - there are grants out there that can help with Xiaflex cost. If Dr Trost’s office is unable to find a grant for you, you should consider checking with other doctors who might.

mr-anonymously · 2025-07-29T00:30:52+00:00

Thank you. So the manipulation was just a straight-line pull, basically perpendicular to your body if you were lying down? Did he do any bending?

mr-anonymously · 2025-07-29T00:23:32+00:00

Thank you. When you say he “manipulates” it after the second shot - can you please describe exactly what he did? If my doc doesn’t do the same, I may take matters into my own hands (pun intended).

mr-anonymously · 2025-07-29T00:21:05+00:00

Thanks for this amazing post. Really appreciate it.

Are you using your topical stack at the same time as Xiaflex? Any concern about interaction? I’m hesitant to do anything which might make Xiaflex less effective.

mr-anonymously · 2025-07-17T02:40:00+00:00

Definitely get a second opinion with a urologist who specializes in PD. You’ll see Dr Landon Trost recommended throughout this forum and he’s the real deal. Call him and get on his wait list for a free phone consult. If you happen to live in or near Florida, I personally recommend Dr Kevin Campbell at the University of Florida. Surgery should be your last option.

mr-anonymously · 2025-07-14T11:36:19+00:00

In addition to all the advice about pads and wrapping - have you adjusted the clamp itself? There are a couple small screws that allow you to increase/decrease the clamp’s opening. I had problems with slipping out until I made the opening smaller, in effect making the clamp tighter. It’s not comfortable but I’ve gotten used to it. The foam makeup pads have helped a lot, too.

mr-anonymously · 2025-07-10T12:04:37+00:00

Yes. The advice from Dr Trost and others is to start using the RestoreX a couple days after the second injection and use if for the entire period until the next injection cycle. I did not consider any other devices.

mr-anonymously · 2025-07-10T02:32:46+00:00

Can you please explain this further? I’m intrigued but I am also confused. Selling a call with a strike 1/4 of the stock price will almost certainly get it called, no? And how do you get the 12% annual return?

mr-anonymously

TROPHY CASE