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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: Approved for xiaflex. I'm terrified  (Read 780 times)

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T6pilot

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Approved for xiaflex. I'm terrified
« on: April 07, 2022, 01:56:34 PM »

I'm approved thru Tricare to receive  Xiaflex injections.

I've been researching and reading reviews. Now I'm terrified about bad results.

 Could someone here with firsthand experience convince me that I'm considering the right thing.

I want to be as straight as possible yet don't want a micropenis afterwards. I  see nothing but bad bad bad reviews

Help!!
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kls

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Re: Approved for xiaflex. I'm terrified
« Reply #1 on: April 10, 2022, 11:03:42 PM »

Hi T6pilot,

In 2016, I had developed a 30 degree upward curve with denting , shrinkage, etc...the works. I was mortified to say the least...

I went to an amazing Urologist in Los Angeles who actually was on the board of doctors who worked with/for Xiaflex for the use of the medicine in the treatment of peyronies.

He started me on Pentox immediately, modeling twice a day, and then scheduled Xiaflex injections (My insurance approved) and had 3 rounds of treatment (6 injections)......

Long story short, I had zero unusual side effects ( albeit scary as hell...horrible multi-color bruising, mild swelling is normal) and now have a mild 8-10 degree upward angle that looks totally "normal". Additionally, all my girth came back, length returned, and dents filled in to within 75% pre peyronies.

I had a good friend of mine who I found out was suffering with similar symptoms and had similar results to mine ( we went to the same doctor)

Needless to say, Xiaflex changed my life. I am grateful for the doctor and I am grateful for the injections.

Please feel free  to message me directly if you have any other questions

Best of luck to you. I hope this helps

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GotHope77

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Re: Approved for xiaflex. I'm terrified
« Reply #2 on: May 15, 2022, 12:17:04 PM »

I just had my first shot 4 days ago.  I’m more worried about how bad my doctor is.  I think that has a large impact of your experience. I have two areas. Right side and top/dorsal.  My docs plan is to do only one shot per month (the full .9g vial).  So I told her I wanted half in the top and half in the side so we could work in both areas.  Also, the plaque is not palpable on the right.  Well, the result was this- she missed the spot completely and injected nearby the right dent twice but not on the top at all.
I have Kaiser Permanente in the Pacific NW. She is leaving that practice soon - for reasons unclear.  They never answer the phone or return advice question messages.

Anyway, I had moderate swelling and purplish/brown bruising.  The numbing shot was the worse. But was quick.  The actual Xiaflex shot felt nothing due to being numb.  I iced about 10 mins at a time (not directly on the skin) 3 times a day.  Also, did the grip compressing a couple times a day.  The swelling went down within a couple days.  Now just bruised.  First night was ok.  Just moderate pain every time I had a nocturnal erection.  The second night, for whatever reason, I had severe pain that actually made me ill with an erection.  Now, on day 4 - I haven’t slept because somehow the Xiaflex is causing my to have erections every hour while trying to sleep.  I couldn’t stretch/model again until the 3rd day because I was afraid to damage more.  But now I can model.  I’ve been using the restorex for a month before the injection.  I stopped the cialis to try and slow down the painful erections.  So, I don’t know if the Xiaflex was or will be effective yet - but  when you’re desperate and depressed- you’ll try damn near anything.  I’m taking handfuls of supplements too.  But for a month of all the supplements and restorex- I’ve seen no change - which is normal.
She also told me to stop the Pentoxifylline.  Said there just wasn’t enough evidence in her opinion.
Be brave, just make the choice.  There are risks. We all know them.  I just hope that the injection won’t do more damage than good.  Wish I had other insurance so I could go see Dr Trost.  I don’t trust my doctor- but she is the only Peyronie’s doctor that Kaiser has for our area.  I asked For a referral out of area and it was denied.  My opinion also- make sure you stretch A LOT and carefully when you are able.  Half the therapy relies on the stretching.  That will keep your junk from shrinking too much.
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52yrs. Peyronies Disease since Jan. 2022; slight E.D. Angles:Right 40*/Up 15* (so far)
Drugs: Cialis, supplements, Restorex., one Xiaflex injection so far.
Married.

Shane43

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Re: Approved for xiaflex. I'm terrified
« Reply #3 on: May 15, 2022, 03:19:31 PM »

My experience is similar to kls. Three rounds (6 shots), each time the pain and bruising were worse, but tolerable. But the last round took about 6 weeks for bruising and pain to go away and I decided to stop there. I had severe hourglassing due to large plague at base of penis (dorsal/top), but only 30 degree bend (my urologist fibbed and said it was 70 degree so insurance would pay for it). The hourglassing caused hinging at the base that made sex impossible - too unstable. Whether it was Xiaflex or just time, I do not know, but indents are only 15-20 percent of what they were before and with the help of cialis my penis is now stable and I can have sex, albeit carefully and only a few positions. I had lost 1-1.5 inches on length and some girth before xiaflex. I did not regain any length but my girth is almost back to where it was. The bend is maybe 20 degree now, so slight improvement there. So, all in all, I would do it again. Before xiaflex I could not have sex, after xiaflex I can have enjoyable sex with limits.
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60YO, hourglass indent/hinging at base 30deg bend up 3cmx2cm hard plaque at dorsal base. No Erectile Dysfunction. 3 rounds Xiaflex decreased plaque/indent/hinge/bend by ~50%. Can now have careful sex, but now getting worse. Saw Dr. Levine, will start PMP for 6 months

T6pilot

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Re: Approved for xiaflex. I'm terrified
« Reply #4 on: May 18, 2022, 11:29:10 PM »

Dr office called up today, we've been on vacation overseas for three weeks.

I'm still apprehensive about receiving the shots but I'm scheduled for first shots on June 2, second on june 7. Approved for total of eight shots

I plan on posting pics before and after injections. Hopefully I'll have good pics to post.

Wish me luck
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T6pilot

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Re: Approved for xiaflex. I'm terrified
« Reply #5 on: May 21, 2022, 05:38:40 PM »

12 day shot clock is ticking
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