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Author Topic: Another new Xiaflex patient with questions  (Read 1269 times)

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Chiefy

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Another new Xiaflex patient with questions
« on: March 09, 2018, 03:30:59 PM »

Hello all,

I'm to start my first injections on the 20th.  Due to scheduling issues/doc availability, I've got to work during that week.  Getting shots Tues & Thursday, modeling Sat.  Can I go back to work after the injections?  My doc told me he doesn't use novicane, as it's oftem worse than the shots and just goes right to it.  I've read some varying stories about how uncomfortable the injections are and what guys were comfortable doing right after?

Speaking of my Doc, I asked him about the differences some of you are seeing/doing with modeling, traction, VED, etc and he instantly waived all that off by saying he follows the protocol to the letter and all his patients have seen some level of improvemtn doing so.  I'm not sure how to take that but figured I'd follow his guidance to the letter, at least in the beginning.


Thanks all
Chiefy
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TonySa

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Re: Another new Xiaflex patient with questions
« Reply #1 on: March 09, 2018, 04:26:35 PM »

I’ve had novacaine, but no pain...sometimes bruising and swelling but not every time.  Also, Dr Lue who I believe developed the Xiaflex trials now recommend 2-4 hrs traction 3-5 days after the 2nd injection and no longer does in office modeling.
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

WhatNext81

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Re: Another new Xiaflex patient with questions
« Reply #2 on: March 11, 2018, 07:27:02 AM »

I've had all of my cycles done back to back(thursday/Friday) since I traveled a bit to the appointments. I haven't had any numbing. Pain varies depending on location and how hard the plaque is. I was shown modeling and their studies showed the people with the biggest improvements did modeling 5x a day, 30sec straight and 30sec opposite of curve. I started modeling after swelling went down, usually the following day of last injection. The plaque is most effectively broken up within 5 days of the last injection. I Also did traction. Just ease into it, listen to your body. Keep it wrapped in the shower while/if it's swollen.

Best of luck
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WhatNext81

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Re: Another new Xiaflex patient with questions
« Reply #3 on: March 11, 2018, 07:38:15 AM »

Pain after.....yes. Work, depends. Office/desk work, I'd say you're good. Anything else, just depends.
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betterbend

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Re: Another new Xiaflex patient with questions
« Reply #4 on: March 11, 2018, 03:33:43 PM »

No post injection pain at all.  Had three injections so far, 4th next week.  In and out of office in 15 minutes.  I Would go right back to work after, except it's an hour drive in and out of Manhattan.  IF I were you take the rest of the day off for the first shot, and see.  My doctor does injections one week apart to lessen the side effects.  Two injections 48 hours apart might cause discomfort. 

I use traction for a minimum of 2 hours per day..
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55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

Chiefy

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Re: Another new Xiaflex patient with questions
« Reply #5 on: March 12, 2018, 10:35:56 AM »

Thanks all.  I found it odd my doc felt so strongly about sticking to the protocol precisely when it appears docs with lots of experience as modifying things a bit situationally. 

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betterbend

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Re: Another new Xiaflex patient with questions
« Reply #6 on: March 12, 2018, 11:48:51 AM »

Well a good question to ask is how much experience does he have using Xiaflex?  Perhaps he is not very experienced with it.  He may have gotten the required training for it and be certified, but that isnt enough in my opinion.  Its sort of a conundrum, I would not let a guy without extensive experience inject it on me, but how does he get that experience if he isnt injecting?  If he hasn't done a lot of patients, with success, maybe try to find somebody who has.  Injection technique is very important with this drug, the better the clinician the less chances of adverse reactions and better outcomes. 
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55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

Chiefy

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Re: Another new Xiaflex patient with questions
« Reply #7 on: March 12, 2018, 01:50:42 PM »



I had found him by searching for docs in Vegas with Xiaflex experience...there aren't many.  He said he'd treated "several" and all of his patients had seen inprovements to some degree.
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betterbend

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Re: Another new Xiaflex patient with questions
« Reply #8 on: March 14, 2018, 12:29:30 PM »

**Update** - this weeks injection was painful, first one of the four I have been uncomfortable after the injection.  Its not debilitating pain or anything like that, its a bad bruise type pain.  I am taking advil and using ice to keep the swelling down.  I think I will forgo the gym for the next 2-3 days, but going to work. 
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55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

TonySa

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Re: Another new Xiaflex patient with questions
« Reply #9 on: March 14, 2018, 03:12:31 PM »

I believe when there is swelling and bruising, the doc has injected some of the drug outside the plaque and the enzyme is attacking the penis tissues vs just the plaque.  I think it happens even with the experienced doc's given the particular density of the plaque--but if it happens regularly, I'd consider another doc.  IMHO
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PxD 2 yrs, failed all tx. 9/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS 18cm + 3rte

betterbend

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Re: Another new Xiaflex patient with questions
« Reply #10 on: March 14, 2018, 05:10:49 PM »

I know this injection was the most difficult.  I absolutely could feel how hard he was pushing to get the drug into the plaque.  I think that what happened is that the drug is forced into plaque, where there is little room for it and the plaque is damaged by the physical force of a liquid being pushed into a tight space.  I would be more worried it was an easy injection, and I had bruising.  To me that would mean the drug went into soft tissue... 
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55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

WhatNext81

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Re: Another new Xiaflex patient with questions
« Reply #11 on: March 19, 2018, 04:24:27 PM »

Agreed. Two of my injections were in very dense plaque. Once penetrated, I could feel the liquid being injected. Crazy stuff. It is hard to find a dr with a lot of expierence under their belt. Sounds like you found a good one. Best of luck to you!
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Chiefy

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Re: Another new Xiaflex patient with questions/comments
« Reply #12 on: March 24, 2018, 10:54:30 AM »

Had my 1st shot last Tuesday.  Had some minor pain after and some swelling and bruising, nothing terrible.  Had my second shot Thursday...much more painful.  The injection itself was awful.  My injection was at 11 and I couldn'y go back to work...I couldn't even stand up for most of the day.  I took Friday off as well.  Substantial bruising and swelling.  My entire penis is purple, except for the head, which is normal color?  Yesterday, when I stood, it would swell almost instantly. This morning, I'm heading to the doc in 30 minutes for my first modeling session.  It's better today, but I couldn't tolerate anything yesterday. 

After both of the injections, I had a burning sensation in my entire penis that started immediately and lasted for several minutes.  Doc said normal but hadn't read that anywhere.

My plague is very low, almost at the base, which I think creates a little more pain when sitting or standing up (pulling sensation).  Anyway, I was shocked by the difference between the 2 injections.  I'd read others had similar experiences between injections/cycles, but...damm
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WhatNext81

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Re: Another new Xiaflex patient with questions
« Reply #13 on: March 25, 2018, 09:37:16 PM »

I've expierenced an uncomfortable pain, similar to a burning sensation, right after the shot to induce an erection. I noticed it happened when done on the right side, the side with plaque. A few cycles I asked for it on the left side and didn't expierence the same pain. Not sure if there was a correlation.

Some of my injections were done near the base. Pain and bruising with almost all injections. Par for the course according to the dr. Fractures, henatomas, infections, pain that doesn't subside are when to worry, generally speaking. Just like some ppl bruise easier than others, maybe the same applies?

One urologist said they had plenty of expierence with injections. When I asked for a ballpark number, the response was them boasting that they had done plenty of successful surgeries involvoing the penis and how good they were at what they do. They then tried to talk me into surgery. I declined and moved on.
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AussieDude

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Re: Another new Xiaflex patient with questions
« Reply #14 on: April 24, 2018, 07:32:25 AM »

Wait... so, your Uros inject into an erect penis? Mine just stretches it strait flaccid, palpates the plaque, and bingo. Why have to inject into an erect penis?
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Scott99

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Re: Another new Xiaflex patient with questions
« Reply #15 on: May 17, 2018, 05:01:23 AM »

I went to John Mulhall at MSC in NYC who is supposed to be good at this.

I've had the condition for exactly a year to the date. My curve wasn't too serve maybe 10-15 degrees but the hinge and hourglass and Erectile Dysfunction was bad enough in my opinion to seek this kind of treatment. I'm 28.

I've read that it can look worse before it gets better. But does the actual healed erection look worse before it gets better? I'm exactly two weeks post second injection. I barely bruised or swelled after the second injection.
 
The plaque feels smaller and softer but my erection looks significantly worse. The indentations on each side are much deeper. The light bruise that was there after the injection is still there now two weeks later. One of the doctors there said it will change throuout the injection cycles and didn't seemed too worried about this. I will hear from mulhall tomorrow.

I refuse to resort to surgery if Xiaflex doesn't work.

If Xiaflex doesn't work it's basically all over for me.

Someone please help with some info I'm terrified.
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