Peyronies Society Forums

Please login or register.

Login with username, password and session length
Advanced search  

News:

Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
https://www.peyroniesforum.net/index.php/topic,17819.0.html

Pages: [1]   Go Down

Author Topic: 1st Xiaflex injection performed today!  (Read 10545 times)

0 Members and 1 Guest are viewing this topic.

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
1st Xiaflex injection performed today!
« on: November 03, 2015, 12:07:12 PM »

I had my first Xiaflex injection 1 hr ago and wanted to post my thoughts for all of you who are considering this treatment.  First, the anxiety about the shot itself is way overblown.  It was really about the same as the shot I received to get an erection for the Doppler Ultrasound, it was really not a big deal and I was surprised it acually went so smoothly.  My Dr. noted all the information from the Doppler Tech and discussed his thoughts and the procedure he was about to perform.  He then had me lay on my back on the exam table.  He manually felt the area of plaque which he believed was causing my upward bend, which was also the same location where I have some hour glassing, which luckily was all confined to one small area.  He swabbed the area with alcohol and then said I would feel a prick, he appeared to inject the area in 2 different spots in the same general area.  It took about 30 seconds total and he was done.  He applied pressure to the injection site with his thumb for about a minute and then wrapped my shaft with gauze tape.  That was it!  Then whole procedure took less than 3 minutes.  I have zero pain and really no discomfort, except for a slight itchy sensation.  My Dr. told me start stretching exercises tomorrow, and no sex obviously, but no other restrictions.  I go back on Thursday for my second shot and hopefully if goes as smoothly as today.  I will report my experience as I go through my treatment and hopefully it will help others considering Xiaflex Treatment.     
Logged

Lucketts

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 98
Re: 1st Xiaflex injection performed today!
« Reply #1 on: November 04, 2015, 11:38:59 AM »



Thanks. Nice to hear.  These Xiaflex injections may be the ultimate solution to the problem, and your information was very helpful.  Please keep us fully posted.  The more information, the better.
Logged

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #2 on: November 04, 2015, 01:13:04 PM »

Took off the gauze tape prior to bed, still no bruising or swelling.  I did do very moderate stretching for the allotted protocol of 30 seconds x 3.  No substantial pain or discomfort during the stretching, but it was a little tender in the area of the Xiaflex shot.  I woke up at 4 am with an erection and when I flexed my penis, drawing in more blood to expand it, it did sting pretty bad in that same area.  I did do some mild straightening per the protocol during the erection but was very cautious in doing so.  All of this was done while I was still in bed and I was not able to examine my penis at that time.  Not surprising, when I got up I did have bruising along the left side and top of my shaft from the base to the head of my penis.  I also was swollen a bit, but nothing to crazy.  Given what I had read in this forum, I was not surprised to find this condition and really it is not that bothersome at all.   I am still able to do the stretching per protocol with only mild discomfort.  Believe it or not, I am looking forward to my 2nd shot tomorrow in hopes that this is going to work!  I did order the 4X Labs Traction device and it should be here soon and I will start traction after my second shot at 2-3 hours per day as suggested in this forum.  I am also considering a VED, probably the Augusta single cylinder pump based on the advice of fellow members in this forum.  So far everything is going as expected and right along the same way described by other members.  It really helped to have their detailed accounts of what they experienced and the things they did during their Xiaflex treatments to increase their chances of success.  It has made my experience much more tolerable and I think my chances of success are that much greater given the collective knowledge of those who went through treatment before me. 
Logged

Lucketts

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 98
Re: 1st Xiaflex injection performed today!
« Reply #3 on: November 04, 2015, 04:44:06 PM »



Very nice.  Things for adding to our collective knowledge.  Out of curiousity, why did you pick the 4X Labs traction device instead say the US PhysioMed? Was that one recommended by some forum members?  There are always uncertainties in every outcome (seeming from shot to shot, based on forum posts), and I hope your next shot goes well.  Some members of the forum have mentioned icing and also keeping the penis vertical after the shot to let blood drain down.  Have you discussed either of these w/ your doc?   Is the doc going to do any in -office modeling?
Logged

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #4 on: November 04, 2015, 04:58:44 PM »

The 4X Labs is mentioned a lot in member posts and it was priced very reasonably.  My Dr. is doing in office modeling a couple days after the 2nd shot which is tomorrow. 
Logged

Mikey89

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 11
Re: 1st Xiaflex injection performed today!
« Reply #5 on: November 04, 2015, 09:48:51 PM »

Bigoli

Thanks for the updates. As someone considering Xiaflex, this is very informative. Please continue to keep us posted on your progress!

Best of luck!

Mikey
Logged

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #6 on: November 05, 2015, 01:01:27 PM »

Had my 2nd shot of Xiaflex today and it went exactly the same as the 1st shot 2 days ago.  No real pain or discomfort, just a small prick like a bee sting.  The Dr. stated that my plaque felt much softer then it did Tuesday when I received my first shot, which he stated was great, but not what he normally sees with his patients after the first shot.  He said generally the plaque is still pretty hard at the time of the 2nd shot in the first series.  He wondered if I was doing anything different at home which might have caused the plaque to soften so quickly.  I told him about the forum and how other members were instructed by their doctors to commence the stretching exercises right away and not to wait until a couple days after the in-office modeling as detailed by the Xiaflex protocol. He said that makes sense and told me to continue with the stretching exercises and even to do the modeling at home prior to my follow up visit which is next Tuesday the 10th for a check up and in-office modeling.   He stressed to not over do it and to be careful in bending the shaft, never going so far as to cause pain or major discomfort, but just continuing to try to get the plaque to soften and lengthen. He noted my bruising was nothing unusual and that my swelling was minor.   All in all the entire experience was just what I expected and not bad at all.  Now I'm just waiting for the results and keeping my fingers crossed.  We scheduled my 2nd round of shots 6 weeks out in late December in case they are needed to keep my Xiaflex medical costs in this calendar year for insurance purpose.  I will post any significant changes to my condition as they occur.   
Logged

Lucketts

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 98
Re: 1st Xiaflex injection performed today!
« Reply #7 on: November 05, 2015, 05:07:52 PM »



Good news again. Excellent. Can you share the name of your urologist?
Logged

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #8 on: November 05, 2015, 06:38:22 PM »

Dr. Euclid deSouza, MD, Omaha, NE
Logged

Frank55

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 163
Re: 1st Xiaflex injection performed today!
« Reply #9 on: November 06, 2015, 05:30:58 AM »

Thanks for posting this info Bigolie. I had an appointment with a uro yesterday and may be looking at Xiaflex as an option eventually, so I'm interested to hear your results.

By the way, I've been using the X4 labs traction device for about a month now and it is fine. Like the other stretching devices, it is awkward the first few times you put it on (the procedure will make you wish you had a third hand.) But overall it is fine.
Logged
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline Erectile Dysfunction possible but not taking drugs, shots or using VED
Now evaluating options for next step

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #10 on: November 06, 2015, 09:56:36 AM »

I had noticeably less bruising and swelling when I woke up this morning despite having my second Xiaflex injection yesterday. I did perform the stretching exercises yesterday and on my morning erection per protocol while still in bed.  I must say my erection seemed straighter!  When I got up I had a 25% erection and usually it starts to pull upwards at that point, however it was still straight!  My wife even said it looked straight, and noticeably less bruising and swelling.  The plaque is definitely softer then 4 days ago when I started treatment.   I must say the commencing of the straightening exercises, as detailed by other members in this forum, is what I believe is the difference maker for me.  I really do a lot of the exercises  throughout the day and especially while in the shower which allows the muscles to relax during my stretching.  I also massage the plague area between exercises which seems to help soften the plaque.  I am very encouraged that I am going to have some great results after my 1st series of Xiaflex, but won't know exactly how it went until after I get my first full blown erection.  Looking forward to getting my 4x Labs traction device and Augusta VED so I can implement them into my daily straightening routine.  Very optimistic at this point!!!!!!
Logged

Lucketts

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 98
Re: 1st Xiaflex injection performed today!
« Reply #11 on: November 06, 2015, 11:20:40 AM »



Continued encouraging news.  Please keep us fully posted on your methods and results.  It is a great help to the community.
Logged

buscador

  • Voting Member
  • **
  • Country: es
  • Offline Offline
  • Gender: Male
  • Posts: 10
Re: 1st Xiaflex injection performed today!
« Reply #12 on: November 06, 2015, 11:59:32 AM »

Congratulations, Bigolie.
Do you perform the straightening while fully erected, or not fully erected?
Anybody else who has had Xiaflex can also answer this question?
Thanks a lot.
Logged

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #13 on: November 06, 2015, 05:02:38 PM »

I do both, when flaccid I stretch it straight for 30 seconds, wait 30 seconds and then do the modeling where I stretch it 30 seconds in the opposite direction of my bend and use my finger as a fulcrum right under my plaque area, wait 30 seconds and then repeat both one more time.  I also do the straightening exercise when I get a spontaneous erection by trying to straighten my erection for 30 seconds.  I never do either to the point of pain, but merely a steady tension with only mild discomfort.
Logged

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #14 on: November 06, 2015, 05:48:51 PM »

I must say based on my own experience, and a lot of what other members have reported in this forum, that the stretching is very important in the overall success of Viaflex, especially the timing of when to start the stretching exercises. The Xiaflex protocol states not to start until after the in-office modeling with your Dr., which can be over a week after your 1st injection.  I suppose the Manufacturer doesn't want any problems arising during the stretching attributed to the Xiaflex injection, and for liability reasons, wants your doctor to show you how to perform these stretches before you try them yourself.  However, in my opinion these directives are mainly for the Company's benefit and not necessarily the patient.  Many members are reporting that their Doctor's are directing them to start the stretching exercises and traction immediately after the first injection based on their own observations of their patients results.  I wouldn't be surprised if the protocol is changed in the future to reflect the finding that immediate stretching and modeling increases the success of the Xiaflex injections.  Once again, this is only my opinion and you should consult your own physician regarding your specific Xiaflex protocol.  But I would definitely discuss immediate stretching and modeling with your Dr. if you are undergoing or contemplating Xiaflex injections.   
Logged

Lucketts

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 98
Re: 1st Xiaflex injection performed today!
« Reply #15 on: November 06, 2015, 07:45:54 PM »



Interesting observation.  I think the protocol says that there should be an in office modeling 1-3 days after the second injection for each cycle.  The in office modeling differs from the at home modeling.  Yet many doctors don't do the in office modeling, and I think even fewer do it after the 2-4 cycle. Perhaps the protocol will indeed change in the future to have the patient do modeling sooner than currently recommended.
Logged

Pfract

  • Global Moderator
  • ****
  • Country: ca
  • Offline Offline
  • Gender: Male
  • Posts: 2335
  • #whateverittakes
Re: 1st Xiaflex injection performed today!
« Reply #16 on: November 07, 2015, 07:31:50 AM »

Both posts above are quite interesting, but for sure only time and experience with this drug will tell that. At least we know that we can definitely have improvements in many cases with this drug. Brings hope for sure.

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #17 on: November 07, 2015, 11:27:02 AM »

2 days post my first Xiaflex series of injections:  Just minor swelling remaining, bruising is going away rather quickly and there is only very limited soreness near injected plaque.  The injections did not limit me in any aspect of my day to day activities, I am an attorney and went right to the office after each injection with no problems whatsoever.  Now the most important part, I am seeing definite and substantial reduction in my dorsal curvature.  I was 50-60 degrees upward curvature with some hour glassing on the left side of my shaft when I started treatment with my 1st Xiaflex injection this past Tuesday, November 3.  I have not officially measured as of yet, but I would approximate that my curvature has been reduce to under 20 degrees and maybe even more thus far. In actuality, I wouldn't be surprised if my curvature is under 10 degrees when I finally get up the nerve to get a full erection and measure my curvature.  These estimates are based on observations of my penis being 50% erect after my stretching exercises in which I see no noticeable curvature and feeling greatly reduced curvature while in bed during my spontaneous morning erection modeling.  The change is very noticeable to me and my wife just by looking at it in various states of semi-erection.  I really can't comment on the hour glassing with any certainty but it certainly appears visually diminished.  I anticipate knowing exactly what the results are when I reach the 2 week point and try it out with my wife.  This is the best Ive felt about my condition in over 3 years, and moreover gives hope to all of you dealing with Peyronies.  The Xiaflex has definitely worked for me and it appears it has done so in a very quick and significant manner.  I am continuing my daily stretching and modeling and will incorporate traction and VED therapy per Old Man's protocol when both devices arrive.
Logged

Lucketts

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 98
Re: 1st Xiaflex injection performed today!
« Reply #18 on: November 07, 2015, 12:56:03 PM »



Very good news.  Amazing how the injection reaction can vary so much person to person.  Did the Doc or PA give you the injections?  Xiaflex injections, perhaps even more than 4 cycles, could end up being the cure for this disease.  Your continued posts give encouragement for those of us sitting on the fence.

Must be great to see the curvature diminishment after several long years.
Logged

buscador

  • Voting Member
  • **
  • Country: es
  • Offline Offline
  • Gender: Male
  • Posts: 10
Re: 1st Xiaflex injection performed today!
« Reply #19 on: November 07, 2015, 02:41:30 PM »

Wow, Bigolie that's amazing!
I had my first cycle ten days ago but I don't have the good results you report...maybe is too early to know.

But maybe a big part of success is related to the time and the way we perform our modeling. That's the reason why I have started a new topic to try to collect different modeling procedures and how are they related to more or less success on the improvements with people who has had the xiaflex shots. I hope people starts writing there to learn more about it.
In my case, I'm strictly following the standard procedure at home. I didn't got in-office modeling, and I started at-home three days after the second shot. Initially I don't want to do something different of what I was told by my doctor, because I don't want to take any risk, I prefer to have a 5º improvement safely, than a 30º taking risks of a rupture or something. But, if we can share our experiences, maybe we can get the 30º improvement knowing that we are performing the best and the safest procedure.

By the way , how long does it take for the bruises to disappear? I still have a lot , two weeks after the first shot. It's going to be hard to use traction with them near the glans....

Thanks for your answers.


Logged

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #20 on: November 07, 2015, 03:54:39 PM »

My shaft is still bruised but not as significant as it was yesterday and does not interfere with anything necessary to my stretching activities.  My 4x Labs traction device just arrived and I watched the DVD and strapped it on.  I think I need to add some tension but just getting use to wearing it right now.  No problem wearing it whatsoever and I am only 2 days post treatment.  Like I previously posted, I followed what a lot of other members did with their stretching, and many doctors who are very experienced in administering Xiaflex are now telling their patients to start stretching and traction immediately after receiving the injections.  I figured that I might as well be aggressive because if it didn't work I was going to get the surgery to have the plaque removed anyway.  My brother had an injury which resulted in a significant 80 degree downward curvature. We are using the same Urologist, and he was recommended to do the surgery over Xiaflex because his plaque is on the underside of his penis and very significant.  My Dr. told me to start the stretching the day following my first shot, however I started that same night due to posts by other members being advised to do so with very good results.  I think it made a huge difference because it is my understanding that Xiaflex has a short half life and is at its peak effectiveness soon after it is administered.  I did what I felt was best for me and what I felt was the best possible approach for success.  This may not be for everyone, but if you are going to try Xiaflex treatment, do your research, consult with your Urologist, and choose the approach you are most comfortable with that gives you the best possible chance for success.   
Logged

Frank55

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 163
Re: 1st Xiaflex injection performed today!
« Reply #21 on: November 08, 2015, 09:02:01 AM »

Bigolie - Thanks again for posting this information. Very informative and helpful.

Two questions - is your insurance covering this procedure? If so, did your doctor mention you had to have a certain degree of curvature prior to the insurance covering it? The uro I saw this week said they have to see a 40 degree curvature prior to covering Xiaflex. If insurance is covering, how much have your co-payments been?

Second, did your doctor advocate traction as a general straightening treatment, or only as a post-Xiaflex therapy (to increase the effectiveness of that treatment?) I'm asking because the uro I saw this week was bleakly skeptical of the effectiveness of traction as a stand alone straightening therapy, but did support the use of VED. His opinion (and he is a veteran Peyronies uro, for what that is worth) is that VED is much more effective.
Logged
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline Erectile Dysfunction possible but not taking drugs, shots or using VED
Now evaluating options for next step

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #22 on: November 08, 2015, 03:04:30 PM »

My Doctor's office is handling the insurance issues and I was not told about any minimum curvature requirement.  I need to fulfill  my total medical $$ outlay, which is $3,500 and they cover the rest.  I am eligible for $1000 reimbursement from Xiaflex, so my total outlay will be Approximately $2,500, and if needed, I will be covered for my 2nd treatment prior to the end of the year.  My Dr. also recommended VED and told me to use it, which I ordered but haven't received yet. When I told him about traction and how other Dr.'s were strongly recommending it, he believed it would be too uncomfortable and that I would be more apt to use the VED.  I am currently doing traction 3 hrs per day and will incorporate VED when I get the device this week. I figure if nothing else it may help bring back any length I lost due to Peyronies and hopefully the VED will help the hour glassing.   
Logged

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #23 on: November 11, 2015, 10:59:46 AM »

1 week out from 1st round of Xiaflex shots, bruising is almost gone and only swelling that is left is at injection site where plaque is located.  I'm continuing with modeling x 3 per day, traction 3-4 hours per day and VED per Old Man's protocol.  My curve is much more elongated than before treatment, by that I mean before treatment my curve was dramatically upward from about 2 inches from base.  Post treatment my curve is more gradual and longer, more like the gradual curve on a banana.  My penis definitely looks longer and bigger post treatment.  At my follow up appointment my Dr. said the plaque felt softer and to really be aggressive in the at home therapy to remodel my curvature .  We scheduled round 2 for the end of December 6 weeks out and I go back for evaluation in 4 weeks.  I now know what Old Man means by taking it easy with the pressure on the VED and not to get thrilled by seeing your penis growing during VED therapy.  I was amazed at how the VED worked and seeing my penis look like its old self in the chamber.  But I used caution and followed Old Man's advised and did not go beyond 50% erection per protocol.  I wish all the therapy was as easy as the VEDTraction is nothing short of a pain in the ass, but I am committed to doing it for at least the next 6 weeks leading up to my 2nd round of Xiaflex.  One thing I noticed is it's not so much of the wearing of the device, but more about getting it on and the pain associated with the head of the penis where you attached the device. I did find a solution that works for me with my 4X Labs device and makes it easier to put on and much more comfortable.  Instead of using the comfort strap, use the noose attachment which is alot easier to put on and tighten.  To add comfort, take a piece of the foam used with the comfort strap and fold it and put it under your penis on the bottom of the noose and then tighten it down.  It is way more comfortable trust me on this one, and so much easier to put on.  All in all I'm very pleased with the progress thus far and it has not been nearly as bad as I thought it was going to be when I started treatment. 
Logged

NeoV

  • Major Contributor
  • ****
  • Country: jp
  • Offline Offline
  • Gender: Male
  • Posts: 2175
    • Neoman
Re: 1st Xiaflex injection performed today!
« Reply #24 on: November 11, 2015, 01:14:44 PM »

This is great news. 50% on the VED is a must. Don't leave it on too long either.
Traction also smoothed out my curve a lot, keep it up!

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #25 on: November 11, 2015, 01:26:48 PM »

That is very encouraging news NeoV, how long do you leave the VED on and how many times a day?  My Urologist was saying leave on for a few minutes and then release pressure, repeat for like a half hour and do this twice a day.  I am instead following the protocol adopted by Old Man, which is 20%, 30% and 50% for 10 sec and release pressure for 10 sec and repeat, for 5 minutes each. 
Logged

Old Man

  • Senior Member - Major Contributor
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 2212
Re: 1st Xiaflex injection performed today!
« Reply #26 on: November 12, 2015, 10:45:17 AM »

Bigolie:

You should follow the protocol that has been recommended for you. One must be careful about over pumping the vacuum pressure. Using too long a period of time for VED sessions can and will lead to further trauma to ones Dick. The watchword for VED therapy is use common sense about the amount of vacuum used and limit the holding times to a reasonable rate and only use one session per day not to exceed 30 minutes. If you desire to use two sessions per day use 15 minutes per session.

Old Man
Logged
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #27 on: November 12, 2015, 12:34:18 PM »

Right now I'm only doing 15 min session per your protocol once per day.  My question, is it advisable to have 2 sessions per day of 15 min or just one 15 min session per day?  Thoughts Old Man?
Logged

Frank55

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 163
Re: 1st Xiaflex injection performed today!
« Reply #28 on: November 13, 2015, 06:50:52 AM »

Bigolie,

One other item on my side. After examination, the last urologist I saw opined that I may have a low testosterone level. I had not even considered this possibility as I thought I had a good diet, exercise, etc. but I agreed to get a blood test to find out.

Turns out he was (once again) correct. My T level was 272 - very low for a 54 year old. In my case, I think it comes mostly from lack of sleep - I get frequent insomnia. But T level is also influenced by certain types of exercise (which I was not doing), diet and vitamin supplements. So I'm working on those also.

Did your urologist bring up the testosterone topic thus far? Looks like it can be a factor in the Erectile Dysfunction side of the equation.

Frank

Logged
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline Erectile Dysfunction possible but not taking drugs, shots or using VED
Now evaluating options for next step

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #29 on: November 16, 2015, 07:57:15 PM »

He knows I'm already doing HRT so my testosterone level is not an issue. 
Logged

Frank55

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 163
Re: 1st Xiaflex injection performed today!
« Reply #30 on: November 26, 2015, 08:04:05 AM »

Bigolie,

You mentioned this is the best you've felt about your condition in 3 years. Did your Doctor express any concern about or comment on your level of calcification? I've read that Xiaflex may be more effective when there is less/no calcification.

Would also be interested in your take on these questions. I'm getting a second opinion next week and intend to ask the Doctor this list.

1. How many Xiaflex procedures have you performed?
2. Do you perform the procedure yourself?
3. Is it done on a flaccid or erect state?
4. What pre and post procedure modeling protocol do you advise to your patients? When does that begin?
5. What is the gap/time period between injections?
6. Do you get an ultrasound prior to performing the procedure?
7. Does an ultrasound show the specific location/size of the plaque?
8. Do you think my plaque is close to the urethra?
9. Is Xiaflex more effective when administered during the acute state?
10. Do you use a numbing shot?
11. Given the facts of my condition, how much of the curvature do you expect would change?
12. What do you think are the differences between the people who report poor to mediocre Xiaflex results and those who report good to excellent?
Logged
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline Erectile Dysfunction possible but not taking drugs, shots or using VED
Now evaluating options for next step

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #31 on: November 27, 2015, 12:46:57 PM »

I had small calcification which was approximately 1mm x 1mm, which was shown on ultrasound.  My Dr. does not use numbing shot, and it was really no big deal.  It is done in flaccid state and he tried to give the shot directly into plaque.  The jury is still out on when to start modeling and stretching exercises, it seems there are a number of different opinions on this.  My Dr. said to start the day after injection, I actually started the same evening as the 1st shot based on the posts of other members here in the forum.  The 1st shot is given and then the 2nd shot is given 2 days later.  The next round of shots is then scheduled 6 weeks later.  At least that is the procedure my Dr. uses.  Good luck and I hope this information helps.   
Logged

Frank55

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 163
Re: 1st Xiaflex injection performed today!
« Reply #32 on: November 27, 2015, 01:00:51 PM »

Thanks. I admire your no-nonsense approach and hope you continue to see good results. I'll post again next week if there is anything interesting to report from this second opinion visit. This Doctor is supposedly very good. We'll see.
Logged
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline Erectile Dysfunction possible but not taking drugs, shots or using VED
Now evaluating options for next step

Mikey89

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 11
Re: 1st Xiaflex injection performed today!
« Reply #33 on: December 10, 2015, 09:38:47 PM »

Hey Bigolie,

Curious to know, how are you doing a few weeks out now? Any noticeable bruising and/or swelling/pain? Back to normal? Thanks for taking time to post.


Mikey
Logged

Adam

  • Voting Member
  • **
  • Country: de
  • Offline Offline
  • Gender: Male
  • Posts: 37
Re: 1st Xiaflex injection performed today!
« Reply #34 on: December 11, 2015, 02:29:49 AM »

Hi Bigolie, i would like to know ,how big your plaques are? You have explained, that the calcified part is just 1mm*1mm. Its really tiny isn t it? Thanks for your time.
Logged

gringoviajero

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 106
Re: 1st Xiaflex injection performed today!
« Reply #35 on: December 11, 2015, 12:07:02 PM »

Bigolie - We seem to be on parallel courses, with me being a month behind you.  My posts can be seen at the top of the board Forum Xiaflex Results.  I will keep redundancy to a minimum here.

I had read briefly your opinion on starting home modeling early and tried it, but that was a mistake.  Very painful and risky too, I feared.  Dr. Carrion had said the week, even 2, following injection were the "red zone", greatest risk of haemorrhaging.  After 5 days, four days ago, I resumed the VED (homemade, see above referenced post) aggressively.  I follow the regimen I outlined in those posts.  If anyone is interested in the study which led me to use the hot-stretch-chill routine, I can look for the link.  Everything nearly I do for this is based on a study, although not necessarily Peyronies Disease-related.  The hot-stretch-chill study is athletic medicine and for tendon recuperation.  The bromelain experiments were based on a burn wound debridement study.

I too may be seeing an improvement, but it is too soon to be sure.  Could be a "flash in the pan", a one-off.  My plaque is soft, as I've stated, and running nearly the entire side.  I thought soft was an advantage; now I'm thinking because of it's size, like a band-aid, it may be more difficult to treat.  It covers a lot of area.  Carrion did his best to cover ground, but .58ml isn't much.  2nd round is January.  He was cool enough to order my dose ahead because, like you, next year's insurance won't cover it.  So it's one more shot or nothing (I'm poor).

With the homemade VED I incorporate the heat-stretch-chill approach.  Carrion thinks that's an excellent approach.  Basically, you pre-heat the penis (microwavable gel bag wrapped around a wet washcloth: moist heat penetrates deeper) for 15 minutes, then stretch while continuing to apply heat (heat lamp; VED tube is clear) for 5 cycles: stretch 3', rest 30", repeat – then remove and stretch by hand while chilling (ice bag, frozen washcloth, whatever) for 15'.  The thinking is the collagen fibers will loosen, line up, then fixate.

Good fortune to us.
Logged

Frank55

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 163
Re: 1st Xiaflex injection performed today!
« Reply #36 on: December 15, 2015, 06:35:42 AM »

Gringoviajero,

What did your Doctor think about your starting VED 5 days after a Xiaflex injection? I had an appointment yesterday with a uro to discuss the Xiaflex option, and he was very conservative about post-injection therapy. He said he would advise doing only the daily self modeling exercises after injections.

Bigolie may be right that urologists do this for their own self-protection - not because it is absolutely necessary. On the other hand, the prospect of a rupture is frightening.

The good news in my case is the plaque is more concentrated in a single spot, so accurate injections may work well.
Logged
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline Erectile Dysfunction possible but not taking drugs, shots or using VED
Now evaluating options for next step

gringoviajero

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 106
Re: 1st Xiaflex injection performed today!
« Reply #37 on: December 15, 2015, 03:43:21 PM »

I only told him my procedure, not when I planned to start because I didn't know; depended on my condition.  I started too early at 3 days, or whatever it was.  At 5 days it wasn't too bad, but I overdid the pressure and I was sore until I stopped doing it day before yesterday.

I had 2 nocturnal erections that I believed were a big improvement.  I developed a bad cold and didn't have an erection for 3 days.  Today I gave myself an erection and it was just as it was before Xiaflex.  Very discouraging.  Not at all sure what to do.

Part of the problem we all have is misinformation or sketchy information.  For example, we're told not to mess with it a week or even two after the shots, yet the doctor is supposed to model us the next day.  My doctor, Rafael Carrion in Tampa, is highly respected in the field, and all he did was give me 5 min. of instructions in self-modeling.  He admitted it was ridiculous, that we all already know what to do, but the federal gov't forces him to do this as he (USF Health) receives federal funding.  So is it safe to start modeling immediately after the 2nd shot or no?

Some literature says to not model or use the VED for 2 weeks, while others say wait just 3 days.  It's hard to know what to do.  I've researched and cannot find the info on the activity period of Xiaflex in the penis.  A graph of it's activity/potency would be helpful.  I think there's too much influence of the fear of litigation; Auxillium-Endo are erring on the side of caution.  Only 5 guys had corporal ruptures out of more than a thousand.  I'll bet the most effective approach is a more aggressive one, and they know it.

I can't decide whether to continue the VED regimen or not.  The hydraulic pressure may not be as effective as the mechanical pressure, although it does press in all directions while the mechanical, i.e. stretching, only goes longitudinally. 

We just don't have enough information.  They treat us like children.

Logged

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #38 on: December 25, 2015, 04:04:08 PM »

Well its been awhile since my last posting so I wanted to give an update.  I had my 2nd round of Xiaflex on December 22nd and 24th.  Very little swelling and absolutely no bruising, everything was performed exactly like my 1st round.  One change I instituted was that I started traction immediately after the first injection and really increased the duration to about 3-4 sets daily of 2 hours each set.  I also did the modeling each day starting right after the first injection and performing it 3 times per day.  I will incorporate the VED therapy soon.  My plaque is noticeably softer and smoother, and I have no pain whatsoever. I have been doing traction daily for about 3 hours since my first treatment and also VED about 5 times per week per the protocol found in the forum.  I am hopeful that my curvature will continue to decrease and my length and girth will continue to increase.  Still very satisfied with the treatment thus far.
Logged

Lucketts

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 98
Re: 1st Xiaflex injection performed today!
« Reply #39 on: December 25, 2015, 06:03:11 PM »



Great to hear.  Good luck with continuing improvement.

Did your euro do office modeling after the second injection after each cycle?

If so, what was the office modeling like?

           
Logged

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #40 on: December 25, 2015, 07:03:39 PM »

No, he wanted me to begin modeling on my own starting right after the first injection.  So I actually did the modeling and traction right away and didn't wait for in office modeling, which would have been almost a week after my injections because of the holiday.  It appears based on my own personal experience, and that of others, that starting the modeling and traction immediately after the injections helps to break down the plaque especially since the Xiaflex is at it's peak effectiveness at this time.  I could feel a lump of plaque before this round of Xiaflex and it is already smoothed out after only 1 day post treatment.  But I must tell you I've been very aggressive in my modeling and traction the past 4 days and it appears to have really smoothed the plaque out.  Keeping my fingers crossed. As a side note, I'm really surprised that I had no bruising or swelling at all this round.  No pain at all post treatment, not even the area around the injection.  The 1st round 7 weeks ago I had some swelling and quite a bit of bruising, and the first couple nights when I got nocturnal erections it really stung in the area of the injection.  This round absolutely nothing.   I don't know if it is the aggressive stretching and traction, but it is something. 
Logged

gringoviajero

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 106
Re: 1st Xiaflex injection performed today!
« Reply #41 on: December 25, 2015, 08:38:13 PM »

Bigolie - You say that Xiaflex is at its peak effectiveness right after injection.  I've been searching for information on the activity of Xiaflex over time after it enters the body, but I've found nothing.  Where did you find that info, the link?  A timeline graph would be great, but I've yet to find any information on lifespan or effectiveness.
Logged

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #42 on: December 26, 2015, 05:59:18 PM »

This info is from my URO, he indicated Xiaflex is at its's peak effectiveness very short term. Talk to your Urologist.
Logged

Frank55

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 163
Re: 1st Xiaflex injection performed today!
« Reply #43 on: December 27, 2015, 01:11:10 PM »

Bigolie,

Thanks again for your ongoing updates. Very helpful information.

One question - what is the in office modeling like? Does the Doctor simply show you how to do the stretching exercises described in the Xiaflex flyer, or is there something else to it?

Thanks,
Frank
Logged
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline Erectile Dysfunction possible but not taking drugs, shots or using VED
Now evaluating options for next step

Lucketts

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 98
Re: 1st Xiaflex injection performed today!
« Reply #44 on: December 27, 2015, 07:27:06 PM »



 Bigolie, I think the protocol is to do the in office modeling 1-3 days after the second shot.  If you had it done, do you think that you've recovered enough after the second shot to allow the doc to do his pulling and tugging right after the second shot or do you think it might be better to wait a few days to recover from the second?  Given your belief that the max effectiveness is right after the shot, one would think the sooner the better.  From what I can tell though, the practice of a lot of docs is to who show you the home modeling, but to skip the office modeling.  The injections and almost everything else about peyronies really goes to show that this part of the medical field is "an art as much as a science".
Logged

Bigolie

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 24
Re: 1st Xiaflex injection performed today!
« Reply #45 on: December 28, 2015, 01:09:33 PM »

I start with modeling and traction the same day as the 1st injection and continue right through the 2nd injection for about 6 weeks total.  I know this is not the recommended protocol from the Manufacturer, but it is what has worked best for me and many other members on this forum. 
Logged

Lucketts

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 98
Re: 1st Xiaflex injection performed today!
« Reply #46 on: December 28, 2015, 04:04:45 PM »



Thanks. Whatever you're doing is working well.

Surprised that w/ all the money involved in this drug that the manufacturer hasn't done trial studies to see whether a method like your is more effective than their prescribed protocol.
Logged

Frank55

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 163
Re: 1st Xiaflex injection performed today!
« Reply #47 on: December 30, 2015, 05:59:18 AM »

Good point Lucketts. I'm guessing the manufacturer actually has done such a study, but chooses to endorse the most conservative approach due to liability issues. The Xiaflex web site is one big risk warning.

That said, the prospect of a corporeal rupture (think I have that spelling correct) is terrifying. Definitely not something I'd like to endure.

One other side note - the urologist I've been consulting referenced the initial control group study that was done with Xiaflex (where 5 treated men out of about 1000 did rupture after the procedure.) He said they found upon further questioning that 3 of the 5 men who ruptured had sex within 48 hours of the treatment. Which of course was probably the cause of the rupture.

Upon further reflection, that seems hard to believe as I've heard the penis typically has bruising/soreness for a period after the injection(s). Who wants to have sex in that state?

However, I've also heard the level of soreness/bruising also varies by individual (Bigolie, for example, seems to be enduring it well.) So maybe they were part of the group who had little reaction and (foolishly) felt that sex was OK. Just a guess.
Logged
Single and 58 yrs. old - first peyronies symptoms Fall 2015
Had grafting surgery by Franklin Kuehhas in June 2016 - complete failure
Borderline Erectile Dysfunction possible but not taking drugs, shots or using VED
Now evaluating options for next step

gringoviajero

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 106
Re: 1st Xiaflex injection performed today!
« Reply #48 on: December 30, 2015, 05:03:11 PM »

Frank - in this thread we've been kicking around the same balls: conservative approach, fear of litigation, effectiveness timeline, et al.  I think we're on the same page.  Frustrating that Auxillium, because of our litigious society in the States now, is being so cautious that it hinders our prospects of repair.  It becomes like the boy who cried "wolf"; difficult to parse the truth.

My doctor, for example, Carrion, is required by the feds to call in patients for instruction on self-modeling, even though every guy on Xiaflex has seen the videos and knows the exercises.  For me that meant a 170-mile round trip, and Carrion knew this but could do nothing about it.  He apologized for spending less than 5 minutes with me, but said his hands were tied.  So it is with all of us with this drug.  We're trying to figure out what's real, what's true, what's the best course to take, because Auxillium's obvious primary concern is avoiding lawsuits.  How many times have you read the word "gently" on their Xiaflex pages?  Yet those physicians who do do the modeling are not gentle at all, are they?  That's an important discrepancy, just like the discrepancy between our being told to wait a week or two before self-modeling but the protocol requiring the doctor to model us within a day or two of the 2nd injection.  Crazy!
Logged

kuaka

  • Major Contributor
  • ****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 628
Re: 1st Xiaflex injection performed today!
« Reply #49 on: December 31, 2015, 09:37:47 AM »

Welcome to the USSA...

Without getting too political, it is most important to do your own research and manage your own treatment to the best of the knowledge you can gain. 

For instance, the other day I had my first ever kidney infection.  I attribute it to a weakened immune system from the flu shot my new client required, which had me sick for almost three weeks...but nobody will ever make admit a connection.  I quit getting "sick" when I quit getting the flu shot...some 15 years ago.  Ultimately, I got over it with apple cider vinegar and raw honey.  I've had bladder infections before...infrequent...and they usually pass in a day.  This is why didn't attack this immediately.  Anyway, once I started the ACV/Honey it was only about 2 hours before the kidney was ok.  Afterwards, when I got home, I gave myself a shot of oxytetracycline.  This is the broad spectrum antibiotic which was at one time the standard for urinary tract infections...I have livestock, so I have it on hand along with sterile needles.  At any rate, I'm fine now.

The point of this is to reinforce the concept of "do your research" and take control of your own health. I only go to a Dr when I need a prescription medicine.  My Dr loves me, as I walk in with a diagnosis and proposed treatment...all he does is enough examination to confirm and write the scrip.  It makes his job much easier, and no "practicing" on me.

Logged
Pages: [1]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
1 Replies
2117 Views
Last post January 20, 2016, 09:50:29 PM
by Pfract
2 Replies
1809 Views
Last post January 17, 2017, 07:39:25 PM
by QuackAttack
6 Replies
516 Views
Last post August 01, 2022, 07:15:37 PM
by Oconee