First Shot Tomorrow

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hope4all

I'm trying to keep my expectation in check, but having read mostly good reviews here I'm not feeling as anxious as I was with Verapamil shots. Had six rounds of those 5 years ago and after developing another nodule and no improvements I stopped before the 12 rounds of torture could be completed.  My little guy looked like someone took a baseball bat to it after every treatment.  It was surreal watching the doctor trying to swiss cheese (Peyronies Dictionary, verb) the plaque with the needle.

I've misplaced my traction device, having moved a few times in the last few years and debating whether to order another.  I don't think my doctor is a fan, but I'll talk to him tomorrow about it. I still have my three cylinder VED though.

Has anyone continued to take their daily Cialis in the days following the shots or is that dangerous?

Can someone direct me to how to measure the curve oneself?  I saw that somewhere here on the boards but can't find it now.  

I'll update as the "situation" unfolds.

Thank you again for this site! How is it paid for by the way?

hope4all
 
 

LWillisjr

There is a PDF file attached to the following post in the forum's library. Let me know if you have any questions.

Les


https://www.peyroniesforum.net/index.php/topic,4760.0.html
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

hope4all

Thank you so much LWillisjr!

One doctor says I have a 45 degree curve and another thinks it more like 60-70 degrees.  I tend to think it's on the higher side and this will really help me.  

NeoV

Hope, why are you getting more shots if they stopped helping you? I don't know many of us here who can recommend the shots. But that's my own impression.

hope4all

Hey NeoV.  It's my first shot of Xiaflex tomorrow.  I had 6 rounds of Verapamil several years ago which made my Peyronies worse and caused a lot of bruising and discomfort.  If I can live through those shots the Xiaflex should not be a big deal.

NeoV

Oh I see, sorry about that. I wish you luck! seems to be helping in a lot of cases. Let us know how it goes.

james1947

hope4all

Wish you good outcome from the Xiaflex treatment.
Don't forget to update us, especially the results.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

hope4all

I had my first shot later this afternoon so it's only been about 3 hours.  I watched him get the little vials ready and syringe and thought to myself, this costs how much?! It took longer to get that ready than it did to perform the shots.

He injected directly into the chord at two, maybe three locations without numbing agents, which was fine by me.  Again, I've had Verapamil shots in the past, which I would put on a pain and recovery scale of 8 out of 10.  The Xiaflex shot today was a 3 or 4 out of 10 on a pain scale. The needle seems much smaller than Verapamil, and I would always bruise and get swollen almost immediately.  Haven't seen any bruising or hematomas yet, and can't even see the injection sites.  He did not wrap me either.  He did go over the stretching exercises with me and what to do if I get a spontaneous erection.  

I can feel something at work in my penis, a burning sensation comes and goes and I had a couple intense unexpected jolts pain while at rest several minutes ago.  The night time erections should be interesting, a little worried about that.  

Headed back on Monday afternoon for the 2nd shot.  

I've waited 5-6 years and have been following Xiaflex through the rumor mill to the FDA process and delays.  I've been patient, and definitely had my psychological setbacks here and there, but knew someday there would be some type of alleviation from this dreaded condition.  

Thanks for all of your stories and experiences!
hope4all

GS

hope4all,

I had my 1st round of injections starting 12/19/14.  So far, I've been amazed by the improvement...hope you will experience the same. Please keep us posted.  

GS

hope4all

Thanks GS, I hope so too!  Had my 2nd shot today and my first hematoma and bruising.  He used all of the shot on one spot unlike the 1st shot this past Friday where he used it on 2 different areas.  

The doctor told me today his patients have seen better results than what was reported in the trials.  I've learned to temper my expectations with this disease...but I'm staying positive and doing the therapy as prescribed.  I'll be adding traction in a few days but nothing too long, just 20 minutes here and there throughout the day.  Working from home when I'm not traveling, makes it very doable.

keeping fighting.

Knight

Good luck hope4all! Please keep posted on your experience and results. I am hopeful 4 u!

God bless!

hope4all

Thanks everyone.  Well, what was a bruise last night is horrific looking today, to the point I'm a little concerned.  As I've said previously I had really bad bruising when I did Verapamil shots several years ago, but this feels different and looks different.  Maybe it's the drug working?  My doctor said that his patients who had the most bruising tended to have the best results.

The bruising is almost on the entire shaft except for a little section on the left side where it's demarcated by an exactly straight line from the glans to the base. One side is bruised and the other side of the line is completely normal.  parts of the shaft are red as if it's fighting off a foreign substance...you know when white blood cells rush to an affected area, and other parts are unsightly and extremely sore.  Hopefully, this is the worst of it.

I'm not scheduled to see the doctor until the 2nd cycle of shots 6 weeks from now.  He doesn't do in office modeling, just prescribes the daily stretching and straightening recommended by the drug maker.

Knight

As I explained in my PM I too experienced massive swelling and bruising from round 1 of the Xiaflex injections. It was a very frightening sight and it was a little uncomfortable but it looked way worse than it felt. This lasted for a good 2 weeks. i went through much more trauma during round 2 as my doctor used a big stiff needle to literally break up and tenderize my plaque prior to the first injection of this series yet my swelling and bruising were far less dramatic. I was however considerably more sore for obvious reasons.

There doesn't seem to be any specific reason as to why we bruise or how much we bruise. Mending has reported absolutely no bruising on his last round of injections.

Take it easy and don't hurt yourself but try to start stretching and reshaping immediately.

Good luck!

hope4all

Thanks Knight!  There was no bruising at all after the first shot and then, WHAM, after the second shot.  It even felt more uncomfortable on the first shot than the second.  Thanks for the recommendation to take it easy until the pain subsides.  I've been doing the exercises but my dick is ANGRY at me...it's definitely swollen to the point it doesn't want to stretch much more than it's current flaccid state.

I'm in fairly good shape and jog 3 to 4 miles a day, at a minimum, and also workout regularly at the gym.  After the first shot I jogged after 2 days.  This time around, I don't see myself jogging for a few more days.  

Knight

Yeah, even though my doctor told me I could do it if I wanted to I took a few days off from working out after round 1 and 2. I know you don't want to touch it but try to do as much stretching as possible. You need to reform that plaque while the Xiaflex has it broken down and in an altered state.

hope4all

What is involved and how is modeling carried out by the doctor?  Is it done after the second shot of each cycle or started in later cycles? I've had my first round and will return in 6 weeks for my second round.  I was reading another thread where the poster had pain blockers injected so the doctor could model the penis.  It must be pretty intense manipulation if local anesthesia is needed.  

Isn't modeling by the doctor part of the manufacturer's treatment protocol?  You'd think the manufacturer and distributor would verify that doctors are using their product correctly.  

On a positive note, I woke up with a really intense erection this morning so I did the recommended 30 second straightening exercise. Before doing it, I put my hand around my penis and the curve felt slightly smaller.  Upon closer inspection it looked about 5 degrees straighter.  You get to know every inch of your penis when dealing with this disease so subtle changes like this one become very noticeable.

hope

hope4all

Man, I love this board!  I found the REMS treatment/training guide someone posted back in August! I'm not sure how to hyperlink the post...at any rate, Thank you!
xiaflex dr training guide - Peyronies Society Forums

james1947

Merged your topics otherwise no one, including yourself will not be able to follow what happening.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

hope4all

Two weeks out from my first round of shots and my curve appears to be improved by 10 degrees, having started at 45-50 degrees.  I've been surprised to see some girth come back as well! The hour glassing right below the head (about half an inch in length) is more like a dent on the right side now, it's definitely filling back in on the left side. Bruising has completely cleared up as well.

My plaque is on the right dorsal side starting just above the base to just before the head, with a nodule in the middle. I think the doctor focused more on the bottom of the cord because that part feels much more spongy then the top part...it almost feels like it's been melted away.  

I've been doing my stretching exercises and started traction this past Monday. I forgot how much I hate that torture device and how difficult it can be to wear, physically and psychologically. It's a constant uncomfortable reminder...but whatever it takes to help this process along!

Several months back I bought a standing desk add-on from Varidesk that has been worth its weight in gold.  I now stand almost all day while working which helps burn calories and relieve pressure in my crotch. It also makes it much easier to wear the traction device and prevents the head from slipping out as easily. I work from home mostly so wearing the traction device during the day is doable.

I'm taking 2.5mg of Cialis every other day to promote stretching while sleeping.

I'm really grateful it's working so well thus far...and will keep up the exercises and hope for continued improvements after the next round.

james1947

An other positive report regarding Xiaflex, encouraging hope4all. :)
It seems this treatment is getting wings, even many of us were skeptical of this new treatment (fist of all myself)

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum