New Member My urologist started with xiaflex. Now I find Peyronie's forum!

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BobRoberts

Hi,
I'm brand new to the forum.
I was diagnosed with Peyronies Disease 7 months ago.
My Boston area Peyronies Disease specialist did all the testing you recommend, but immediately started me on Xiaflex injections.
I'm scheduled to start 4th/final round.  
My angles have improved.  From 50º left to 25º left, and 50º up to 20º up.
I still have a tube shaped, hard plaque the size of a marble 1" from the base on the left side and top.
Erections are soft, but I can't tolerate Viagra or Cialis (back pain, hearing and vision problems)
Doc has suggested Levitra, but I'm thinking it will probably affect me the same as the others.
Has anybody tried Stendra?  It's supposed to have fewer side-effects.
Otherwise, I'm thinking I should try a VED or traction.
Is the PAV cocktail still something I should do?
Thanks

Jonbinspain

As far as I understand it, manual stretching of the penis is part of the post injection therapy with Xiaflex?  In which case, I don't see any reason that you can't begin using traction.

Maybe double check with your Urologist first.  

Pfract

Welcome! I am surprised you were eligible for xiaflex, given that your erections are soft... Isn't that a reason for them not to go ahead? I tried stendra and I was OK with it. But I also was ok with everything else you tried so I don't know what to say to you.

Also... Do you suffer from ED? Or just peyronies?

BobRoberts

I suffer from ED and Peyronie's.
Don't know if soft erection was supposed to be a disqualifier.
My Doc didn't mention it.

I've been taking 1 gram, twice a day, of L-Citrulline, for the last month.
On days when I hope to get lucky I take a total of  4 grams.
It works almost as well as Viagra/Cialis/Levitra, with no side effects.
Since I last wrote, I developed some kind of allergic reaction to Xiaflex.
Excruciating, radiating pain in my lower back, and haunches.
It hits about 40 minutes after xiaflex injection, lasts about 20 minutes, then rapidly subsides.
It happened twice, so they switched me to Verapamil.
No bad reaction to that.

Knight

I went through the Xiaflex routine over a year ago and my doctor stressed the importance of traction and manual stretching. Xiaflex is supposed to break down the plaque and the traction and stretching is key to reshaping the damaged tissues.

I don't see how it could help soft erections?

For the record Xiaflex did NOT work for me. My plaque is extremely hard, like a bone, and short of extraction and grafting I don't think it's ever going away in my case.

Stay strong and good luck!

Yohoo

For the first 4 weeks after taking 5 mg cialis I was experiencing side effects that have more or less completely gone away. I was very tired at first. I was sleeping ten plus hours every night(usually sleep 8-9). I was drowsy throughout the day and was suffering from mild to moderate aches and pains. During sex or masturbation my hands, scalp, and penis would sometimes go completely numb and my vision would get blurry and i'd almost lose consciousness when about to reach orgasm. All these side effects have gone away and I no longer have these problems. The only remaining side effect is an anorgasmic effect that can substantially delay orgasm but not make it impossible. Maybe you should try cialis again and take it for a while to see if side effects diminish or stop altogether.

QuackAttack

Bob,

If you can't use Viagra, etc. you can use VED and a constriction ring, no side effects to drugs there as long as you can get it hard enough. I would absolutely use traction. I just finished my second round and once I get to the two week mark, I am going to use traction and VED and hopefully by the time I get to cycle 3 in January my URO will have my Penimaster Pro and a Soma VED. I am not a fan of my Sizegenetics or Phallosan Forte for different reasons and my VED is a one cylinder which doesn't keep the penis perfectly straight because it has such a large opening. It sounds like you have seen positive results. My URO goes through 6 cycles as a standard course and will go a few more if further improvement is occurring after taking a 3-4 month break. Somewhere on this forum somebody was saying Verapamil after Xiaflex, then another round or two of Xiaflex worked well for him.

BobRoberts

Long delayed update.
Used Stendra for a few months with decent results, but eventually started getting all the same side effects that I had with Viagra, and the others.
Now using L Citrulene 4 grams a day (which lowers my blood pressure as well as my hypertension medication, Lisinopril.)
I take an additional 6 grams about 15-20 minutes before sex and it works quite well.
None of the side effects, headaches, blurry vision, etc.
Anyone else notice serious penis shrinkage AFTER concluding Xiaflex treatment?
Prior to treatment my size was as it had always been, just bent.
After treatment, my walking around size and erect size are less than half what they used to be.