Is it worth a SHOT??

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

Godisreal

Hey, people. Can anyone answer this?
- What determines if a patient is recommended Xiaflex?
I've heard it's primarily for patients with a moderate to severe curvature, but I feel like Xiaflex could be my savior. I read the story of the Italian fella based in London who got completely cured after a few shots.
Is it possible to get Xiaflex-shot in a thin scar causing a small upwards curvature? If so, I will contact a specialist in London ASAP that can help me out. Or is Xiaflex only for "normal" thick plaque's? If I got rid of this scar, my problems would be small to non existent.
After all, Xiaflex is the only FDA-approved non-surgical treatment option for Peyronie's disease.
Could Xiaflex do me wonders? Is it worth a try?
Please chime in on this.
God bless you all
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

samsung

Read, A LOT about xiaflex before you consider it. There are a lot of painful, unsightly side effects that will psychologically bother you. It is not an ordeal to be taken lightly.

It is indicated for people with greater than 30 degrees and less than 90 degrees curvature who do not have significant erectile dysfunction.

They would have a harder time injecting into a thin plaque, yes. It is generally agreed to be less effective on a calcified plaque, but opinion is all over the place there. Some doctors do an ultrasound guided injection, so this may not be an issue in your case.

Only choose a doctor that does these injections all the F^@$!ng time. A high volume person. And only if they follow established protocols.

This isn't a miracle cure. Results are all over the place. For some a miracle, for others nothing. For still others it may worsen your situation.

Read a ton and then read some more. And then decide.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

TDix

Exactly....go to someone who does them all the time.  I went to a general urologist who ended up causing me to fracture.  I had a thin calcified plaque, which made it very hard for him to inject.  I believe I should have not had them, but if your specialist does a lot of them and feels he can do the injection, then the ball is in your court.  Some have minimal effects, others like myself had horrific results.  This is a question you and your specialist will have to make based on how your scar tissue is
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Godisreal

Thank you guys for very useful information, I will definitely re-search this more.
I feel like if I schedule everything with a REAL professional who has great expertise regarding Peyronie's and Xiaflex, the thinness of my scar wont matter. At least that's what I hope for if Xiaflex-injections becomes my reality in the future. And like you both also mentioned, he also have to be an urologist who perform injections like this all the time.
Lastly, I can only understand two valid reasons why Xiaflex wouldn't work.
1#The doc misses the scar and possibly f*cks your dick up as well
2#The scar is majorly calcified and the drug can't penetrate the collagen
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

samsung

The needle can usually penetrate a calcified scar. Mine is like cement. But he can get it in there. It just really hurts. Think of getting battery acid in your dick. But if you have good pain tolerance you'll be fine. It doesn't bother me much now. I still have 2 rounds to go. The calcification hinders the drug's effectiveness. They also probably won't agree to do it if you are still in active phase. Although there is much debate whether it is more effective in the active phase. Xiaflex is really a crapshoot.
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

TonySa

If you do Xiaflex, be sure to add traction and Resrorex had better outcomes than other devices in one new study.
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

TDix

My concern for you is if it is thin and calcified.  That was me, and my uro really tried to push that damn needle in, so much so it was bending.  Dr Yafi did say I could've continued with them but said it probably wouldn't do much due to how thin my scar was and how hard it was
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

shrugs

The first round with Xiaflex was rough! I almost decided to stop after a single shot with the bruising, swelling, and injection site hematoma. The second shot was much better in that regard... But it gave me a 24-hour fever.

However, once things healed up in a month (and they did), I saw a mild but significant improvement and that was enough for me to begin round two.

So far, either because I'm more used to it or because your body becomes more resistant to the side effects, round two has been easier on me.

I'm also fortunate to have a doc who's very experienced giving the shots so that could be a factor.

My mid-treatment advice would be that it could be worth it but the side effects are considerable at first! Be mentally prepared to deal with some discomfort for eventual improvement.
Early 40's. Completed 4 rounds (8 shots) of Xiaflex in early 2020. Using low-dose Cialis and Citrulline to maintain decent results.

Godisreal

I do not have a specialist in my country, they are all nut-jobs. I will stay on oral treatment til next summer, I believe I will take my decision then. I wanna see what supplements and Pentox can accomplish by themselves. I will add both VED and Cialis when we go into 2020, I need money for a VED and no doc has prescribed me cialis yet...
I also believe a really great Peyronie's specialist is a must if you decide to have Xiaflex-injections. Like everybody on this thread mentioned, an "ordinary" urologist doing injections like that seems like dick-suicide. But like I've covered many times before, my situation is highly stabilized, it's actually improving slightly. So ofc I wouldn't just go ahead and stick needles in a healing dick lol but since I could probably pinch the hard scar off with my fingers (that's how thin it is) it's absolutely insane that it causes so much trouble. I have all this healthy tissue around it but it just can't expand since the scar immobilizes the whole dick. F*ck guys, but it is what it is
And TDix, could you please share a picture of how thin your scar was? I doesn't have to be an actual photograph but it would help me a lot if you could show me how your scar was like.
And Samsung, don't forget to keep posting your results with your continuation of Xiaflex.
Thanks again for great information, I really appreciate it.
God bless  
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

TDix

Mine was like a flattened penny across the top just below the glans
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Godisreal

TDix, could you feel the hard flattened "penny" when your dick was flaccid? Also, could you see it (like a lump) while both flaccid and erect? Because I also have an area across the top just below the glans that is pretty hard and penny-like while erect, but yet very soft while flaccid. There are no abnormalities by the eye - looks and acts just like healthy tissue.
Does that mimic your situation? Or does it sound different? Tell me what you think
30 degree dorsal curve, immobility and heavy loss of girth.
My body seems to get very inflamed when I masturbate too often or eat unhealthy.
Using antioxidants, Pentox and hirudoid cream, as well as manual traction, heat and Cialis.

TDix

Mine was always solid both erect and flaccid.  It felt like a small plate inside the skin.  After my Doppler I also found out it "T'd" between my corpora as well.  All of it was calcified.  That was the main reason both Dr Yafi and myself decided it needed to be taken out.  He said he could simply do plication but due to the amount of scarring and calcification we needed to get most of it out
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

samsung

My scar is similar Tdix. Why did Dr. Yafi say it had to be removed? Wouldn't the plication have straightened it anyway?
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

TDix

Because of the size and amount of scar tissue I had.  Plication doesn't fix that.  They removed a 4x3.5 cm piece and I still have scar tissue now
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Bobinlondon

If you are thinking of Xiaflex in Sweden or europe you had better move fast.  As per the other thread further down it is being withdrawn from all parts of the world except the USA at the end of December.  I found one place in London who still had a stock but they were increasing their prices from £1500 a shot to £2500 a shot.  Bad news all round.  Bob
69 yrs old
Peyronies Disease + ED for 6 years. 90-degree sideways bend
Tried VED, diets, Pentox, Restorex plus electrical stimulation, DMSO without success, 
In a long-term relationship. 
Implant by Dr Christopher 22cm Titan July 2022 no RTEs.

samsung

I'd be interested in other forum members' insight on that, but I don't see what it would do for severe non-responsive ED. I'm not a doctor so maybe your doc is right. How can he be sure the plaque causes it? Has he measured for venous leakage?
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

samsung

If he did an an erect ultrasound he would measure inflow and outflow. I don't know why he would say verapamil indicated over xiaflex to dissolve calcification. Verapamil generally known to be ineffective.  Did anyone check for any other issues like for ex. A1C, testosterone levels, any circulatory problems? Psychological hangups? A lot of things can cause ED. I would rule them all out first. And use all other means at your disposal first. You said Pentox hasn't worked. Have you taken a long acting daily med like cialis?
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2

samsung

Dr. Eid told me verapamil is pointless. But it does work for some people obviously  
45 y.o. Single. Onset of symptoms (pain-stinging like a wasp) @ 6/2018. No sudden injury. Curve developed slowly. 40 deg. dorsal. Hourglassing. Torsion to left flaccid. 4 rounds xiaflex. Restorex, DMSO+, heat, arginine, cialis, lipoic acid, vit. K2