Xiaflex Timing

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swimdad

Hello. I've gone through two rounds of Xiaflex and am schedule for round 3 next week. I'm hesitant to go thru a third round without getting a second opinion at this point. I see no improvement, just more hourglass, more bend, and fewer erections.

How necessary is it to have the Xiaflex treatments scheduled every 6 weeks? My third round next week is actually after 8 weeks due to scheduling conflicts with my doc. I would like to postpone this third round another month so that I can see another doc in NYC and get another opinion.

If I do end up going with a 3rd round after 12 weeks - or more - will I have defeated the purpose and perhaps the effectiveness of having gone thru rounds 1 and 2 at the typical 6 weeks intervals?

Round 2 of Xiaflex was brutal for me. So painful I was screaming and crying in the office. If I won't benefit from a 3rd round or if another doc has another opinion or options for me, I'd like the chance to consider it. At the same time, I don't want to not finish what I started - or mess up the process by waiting.

Anyone in a similar boat of waiting beyond 6 weeks?
50 y/o
Right dorsal ~40%
Problems identified July 2022
Diagnosed Sept. 2022
Xiaflex cycle 1 - 12/2022
Xiaflex cycle 2 - 2/2023
Started Restorex with straight traction only per MD after round 2.
- Pentox 400mg 3x
- L-Arg 3x
- Co-Q 1x

richie2222

Do you think the xiaflex made the bend and hourglass worse than before?   Did you use Restorex afterward for modeling?

I've read a ton about xiaflex both on this board and in general and personally I would be hesitant to use it.  Seems like it does more harm than good and the good it does reduces the bend like 20% which isn't a big enough deal for me.

I see a Dr on long island who I think is great and says he does a ton of xiaflex you could try a 2nd opinion with him.  Dr David Peters at NYU Langone in bethpage.
41 M
20 degree curvature to the left
Diagnosed Aug 2022
Also have BPH (I think finasteride caused my Peronies)
Currently on 2.5mg cialis  and 400mg of Pentox (twice a day)
Started Restorex on 11/17/22

swimdad

Thanks for your reply richie2222. I have been using Restorex. I'm not sure if Xiaflex has made my situation worse or if what I'm experiencing is the normal progression of this disease. I really just want to know if anyone has taken a break before resuming Xiaflex or if that's a bad idea that defeats the purpose of the treatment plan in general. I could use the time for a second opinion.  
50 y/o
Right dorsal ~40%
Problems identified July 2022
Diagnosed Sept. 2022
Xiaflex cycle 1 - 12/2022
Xiaflex cycle 2 - 2/2023
Started Restorex with straight traction only per MD after round 2.
- Pentox 400mg 3x
- L-Arg 3x
- Co-Q 1x

richie2222

You could post the question also in the Dr Trost subforum on the board.  He's very good with answering people.  Also I think I've read that Dr Trost does video calls as well if maybe you call his office
41 M
20 degree curvature to the left
Diagnosed Aug 2022
Also have BPH (I think finasteride caused my Peronies)
Currently on 2.5mg cialis  and 400mg of Pentox (twice a day)
Started Restorex on 11/17/22

Mr man

Quote from: swimdad on April 06, 2023, 07:50:57 PMHello. I've gone through two rounds of Xiaflex and am schedule for round 3 next week. I'm hesitant to go thru a third round without getting a second opinion at this point. I see no improvement, just more hourglass, more bend, and fewer erections.

How necessary is it to have the Xiaflex treatments scheduled every 6 weeks?.

Anyone in a similar boat of waiting beyond 6 weeks?

It's not necessary to have xiaflex every 6 weeks. You can postpone treatment.

Xiaflex is only as good as the doctor administering it. Particularly if you have a dorsal curve. This is because hitting target: inside the scar tissue. Is difficult on the dorsal side. Where there are lots of veins, arteries and nerves to navigate through before hitting the inside the scar tissue. Some surgeons are better at this then others.

If your bend is to the bottom side. Succes with xiaflex is much higher. Major arteries, veins and nerves are not there.

As a general rule of thumb. If something is hurting and it's not working. Then personally I would not continue.

I will add I have not had xiaflex treatment. This comes from reading from several people who have had success and failure with xiaflex. Also reading from surgeons. From this site over a 4 year period.  
Latest routine. Started l-lysine 3mg daily, l-proline 5mg daily. Increased vit c intake. Accompanied with almost daily vacuum therapy. Pumping to 100% Exercise caution! Made good progress. L arginine supplements and prescribed potaba are helping.

Sebtp1973

Quote from: swimdad on April 06, 2023, 07:50:57 PMHello. I've gone through two rounds of Xiaflex and am schedule for round 3 next week. I'm hesitant to go thru a third round without getting a second opinion at this point. I see no improvement, just more hourglass, more bend, and fewer erections.

How necessary is it to have the Xiaflex treatments scheduled every 6 weeks? My third round next week is actually after 8 weeks due to scheduling conflicts with my doc. I would like to postpone this third round another month so that I can see another doc in NYC and get another opinion.

If I do end up going with a 3rd round after 12 weeks - or more - will I have defeated the purpose and perhaps the effectiveness of having gone thru rounds 1 and 2 at the typical 6 weeks intervals?

Round 2 of Xiaflex was brutal for me. So painful I was screaming and crying in the office. If I won't benefit from a 3rd round or if another doc has another opinion or options for me, I'd like the chance to consider it. At the same time, I don't want to not finish what I started - or mess up the process by waiting.

Anyone in a similar boat of waiting beyond 6 weeks?

I asked Dr Trost that very question when I was in his office Tuesday. He said there needs to be at least six week between series, but no limit on going longer. In fact , he said the longer between series the better. A long healing process between series seems to help outcomes.  
57 yrs old.
Pre-Trost treatment, 110 composite curve (75 up, 35 left)
Post-Trost xiaflex treatment, 0-15 degree curve.

danh


I got this same answer from Dr. Trost. I went over three months between round one and two. And got great results.
Also, with the four week hiatus of no intercouse after the injections, I wasn't about to rush back for another round.
 
age 62. Onset 2010. 30deg to the left
Did ved therapy for 6 mo. Some help. Lived with it.
In 2020, left bend increased 50-60 
Jan 2023 Did some Xiaflex shots w/ Dr. Trost.
Now, slight curve with hourglassing. hardly noticeable.
Pleased with results.

zrx1200mn

Quote from: danh on April 22, 2023, 08:17:14 AMI got this same answer from Dr. Trost. I went over three months between round one and two. "And got great results".
Also, with the four week hiatus of no intercouse after the injections, I wasn't about to rush back for another round.

What were the great results?
I've go an appointment coming up at the end of June, hoping to be able to try Xiaflex, in addition to RestoreX use. I've been using RestoreX for 20 months.
Age 60

I've had Peyronies Disease for about 20 months. since fall of 2021
I started using RestoreX in late September, 2021.
30 degree curvature to the right. as of May, 2023 the curvature is Still 30 degrees.
first round of Xialflex shots in late September, 2023.

danh

age 62. Onset 2010. 30deg to the left
Did ved therapy for 6 mo. Some help. Lived with it.
In 2020, left bend increased 50-60 
Jan 2023 Did some Xiaflex shots w/ Dr. Trost.
Now, slight curve with hourglassing. hardly noticeable.
Pleased with results.