Done with Xiaflex - success

[wtrenton]

So, I was diagnosed in Dec 2020 about 2 months after pain started. No injuries. No incidents. No micro injuries. No rough sex. Just disease. No idea how I got it. I had no curve at diagnosis, or deformation. Just the pain, and the uro diagnosed it based on that plus an ultrasound. Prescribed 800mg daily of Pentox, which did nothing for several months. He farmed me out to Dr. Lue as I live in the San Francisco Bay Area and Dr. Lue is a world-class expert in this disease and my old uro was not. That was in Mar 2021.

By Apr 2021, it was full blown intense pain any time erect. It was also beginning to curve. By late May/June 2021, the curve was a combined 30 degrees (about 5 up and 25 left). The shaft of my penis was somewhat mis-structured as well; some bulging on the sides and on the back.

In my first visit with Dr. Lue in Apr 2021, he immediately pumped up my Pentox prescription to 1600mg daily, believing the higher dosage was necessary for a man of my height/weight; was surprised at the 800mg the original uro ordered. But I ended up stopping the Pentox by summer as it was doing nothing at all for me anyway.

In May 2021, Dr. Lue started Xiaflex injections. I was to get injected twice in a week, every 6 weeks. He originally expected 5 to 6 injections, but I had a lot more plaques we didn't see at first, and several of the ones I had were VERY thick. A couple of the of the thickest ones needed 3 injections just to break down that one plaque.

Throughout the process, I was supposed to be using RestoreX. I was pretty good about it at first, for a couple months. But I started to lose hope, started to worry the traction would damage things further, etc. I more or less stopped using it entirely late in the summer last year, but kept going through the Xiaflex treatments.

I completed my 10th and supposedly final Xiaflex injection a couple weeks ago. Dr. Lue does not believe there's any more plaques to take out, and our last ultrasound confirmed that. Fingers crossed I don't get anymore. Supposedly that's pretty rare. But then again, so is this damn disease.

Results:

• I have almost no curve anymore. There's a slight curve, noticeable to me and to my wife, but nothing that for anyone without disease wouldn't be considered anything but normal.
• No more pain! That was always my first goal. My curvature was not terrible, and it didn't prevent intercourse. I worried though it would get worse if I didn't treat it and take out the plaques, but since 30 deg. wasn't debilitating in the manner/direction in which it curved, getting rid of the constant pain anytime I was hard was my primary goal. Knock on wood, there's no more pain. I really hope it stays that way.
• Overall since this disease first started, I've lost more than 1 3/4" of erect length. Yes, it's a lot. I went from a solid 7" hard to just barely 5". On days I struggle to get really hard thanks to the Xiaflex (something that I'm told will get better in a few months now that I'm off the injections), it is a tad shy of 5".

I'm back on RestoreX again now, hoping to get some of that length back. We'll see how it goes. Dr. Lue said not to bother anymore if it doesn't come back in 2-3 months. So I'm trying really hard to doing 60-90 minutes every day. I can't really break that up though. I can't find time in the mornings between work and getting kids out the door. So it's always in the mid to late evening when the kids are asleep and I'm done with work for the day. Hopefully it's all the same if you do it all at once instead of breaking it into smaller sessions.

What surprises me is that my curve has almost vanished even without doing the RestoreX very well last summer or at all in the fall/winter.

But I'll take it.

Really hoping this sticks and I don't get the symptoms returning again.

I'll have a hopefully final checkup with Dr. Lue in a few months, and probably an annual check-up after that.

Paying for this...

For those who are interested in the financial side of this, my insurance ended up covering 100% of it, except for the RestoreX which was not at all covered. I'm on military Tricare. Of course, the original uro and all the Pentox were covered without issue. The Xiaflex was approved, but they only approved 4-5 injections at a time, and then we'd have to go back for another authorization which would cause another 3-week delay. I believe they required a combined 30 degrees of curvature to pay for it, but we didn't have an issue there. Like most insurance, they did not cover a penny of the RestoreX, so we paid for that out of my wife's FSA. I went back a few weeks ago and tallied up all the costs insurance has paid out for all the Xiaflex, ultrasounds, doctors, medicines, etc. Even with insurance paying, it was tens of thousands of dollars.

[Kobegianna]

Do you have before after photos?

[zrx1200mn]

congrats on your recovery  
being no fan of needles myself, how painful were the Xiaflex injections?

[wtrenton]

Do you have before after photos?

Unfortunately, I don't have any good before photos. I took them early on to show the doctor, but paranoid about them sitting in the cloud forever, I deleted them. I have after photos if it's helpful, but I don't have a good before one to show you as a comparison.

[wtrenton]

Unfortunately, I don't have any good before photos. I took them early on to show the doctor, but paranoid about them sitting in the cloud forever, I deleted them. I have after photos if it's helpful, but I don't have a good before one to show you as a comparison.

I won't lie. They sucked. I have a low pain tolerance to begin with, though. In general, the needle pain comes only from the numbing shots because once it's numbed sufficiently, you don't feel a thing down there. Some of the numbing shots were fine -- well, not fine, but not especially painful. The painful ones were the ones injected into parts of the penis that were especially sensitive. Because the plaques put significant pressure on some of the nerves in the penis, some areas can be significantly more tender than others. Those hurt like a mofo, but it was also very brief -- a few seconds at most.

I have no general issues with needles. But I sure found needles into the penis to be a miserable experience, even if the pain/discomfort was relatively short-lived. But...but...honestly? Small price to pay to have a chance at getting over this crap. Truly. If I got another round of plaques down the road, I wouldn't avoid more Xiaflex just on account of the needles and the discomfort they cause. I mean, for me, what's the calculus? Intense sometimes extreme pain every single time I'm hard -- for the rest of my life? Or the discomforting pain momentarily caused by needle injections 10 times in order to stop that lifetime pain from the disease? It sucked, but that's a no brainer for me.

Sidebar -- the side effects of the Xiaflex were, generally, a lot or non-existent. There wasn't much in between. My first two injections nearly a year ago now, caused severe bruising, moderate to significant swelling, and a fair amount of pain for several days (https://www.peyroniesforum.net/index.php/topic,16058.msg142069.html#msg142069). Chucking the chicken several times a day for 10 mins each time greatly diminished the symptoms and how long they lasted. And then it was largely fine through months of treatments. It was always a little uncomfortable after the injections for a few hours to a day, but not really what I would call painful. Maybe some very slight bruising here and there, but for the most part, the Xiaflex injections didn't cause many side effects. Then my final session two weeks ago? It was like the first two a year ago, but worse. Massive swelling - far more than before - and about the same level of severe bruising again, plus pain/discomfort for a few days. Not sure why the final session was any different than the months prior, but it came to pass, too.

[Kobegianna]

😂😂😂 why does anyone that has "success" or seen "improvement" never ever have before and after photos?? I want to believe you guys but I find it very suspicious that almost every account of improvement comes with some excuse that they forgot to take photos. I call cap 🧢 🧢

Only person I've seen shown actually real improvement is Nolte99. But who even knows anymore  

[wtrenton]

😂😂😂 why does anyone that has "success" or seen "improvement" never ever have before and after photos?? I want to believe you guys but I find it very suspicious that almost every account of improvement comes with some excuse that they forgot to take photos. I call cap 🧢 🧢

Only person I've seen shown actually real improvement is Nolte99. But who even knows anymore

Alrighty then. Well, I'm sorry to disappoint. I can't speak for others, but I personally do not find it necessary to photographically document every step of my penis's self destruction. My penis and I have known each other for a long time. I have a pretty good idea of what he looked like in the Before Times, during, and now looking ahead to a future in which it'll never be the same, but is certainly improved over the worst of this disease. I took photos when I needed to, shared them where it was necessary to make medical diagnoses or decisions, and then disposed of them so I don't have them lurking around forever in the cloud. I'm a really private person in the first place. Partially because of the work I do by day. Partially because I am just uncomfortable putting a lot about myself out there, most of all stuff about the most deeply personal thing a man can discuss about himself.

But that's me. To each their own. You may not like that answer, or think it odd that I wouldn't have before and after photos. But it's hardly suspicious. And I suspect my view may be quite common.

But here's the thing.

At the end of the day, it doesn't matter if you believe me and others or not. Your medical decisions and prognosis are between you and your doctors. No one else. We are all here to support as best we can with information and experiences about what worked and didn't work for us. I've been clear what failed for me and what actually did work -- and I would add, more so than I expected. There's been some real darkness over the past year working through this. But those personal experiences and knowledge/resources are really all we can do for each other. Photos may help tell our individual stories, but they are certainly not proof of what will or will not happen to anyone else's unique case. There are plenty of studies and even clinical data available online for Xiaflex and all the other medical options. Our own experiences are anecdotal; they add little to nothing to the scientific consensus and medical-informed opinions about treatment options and likely/unlikely outcomes for patients. Only doctors and the patients themselves are in a position to make that calculus for each individual case.

I wish you the best of luck.

[zrx1200mn]

thanks