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[rojenner]

First time poster - am grateful for this board.

My Peyronies came out of nowhere summer 2018.  No injury event that I remember.  Started out with a small knot on top.  First urologist said it with nothing.  Found Xiaflex and found a urologist who is trained and seems to be experienced.    Plaque is on top and also on the sides.  Had 1st Xiaflex injection early January - no real improvement other than I don't feel the plaque on the top any longer.  Decided to do 2nd injection which occurred 2 weeks ago and am diligently doing the modeling as recommended, plus I am doing some gentle bending in the opposite direction of the upward curve .  No immediate improvement but after reading posts on this board it appears that may not be unusual.

Working to remain optimistic and patient, but it is a bummer to say the least.  My wife is very supportive.  

Will see how this progresses.  Contemplating next steps over next few weeks:  

Do I take a 3rd shot or just wait and keep modeling?  
Should I do traction?  
Should I take supplements?
What else could / or should I be doing?
Should I have surgery?

Thanks!

[LWillisjr]

You say it started out with a small knot, but what are your symptoms now? I assume you wouldn't be pursuing Xiaflex unless you have some curve or deformity now.

[tonyode]

Rojenner...obviously this is ur decision, we can only give your two cents. But you have to remember, this is a marathon, patience is key. I have taken two rounds, 4 injections. 3 were pretty easy, normal reactions. The 4th was brutal as I experienced a rupture. Hurt and major swelling. Still healing about 6-8 weeks later. I also take pentox and a bunch of supplements. So all that being said, I can definitely see and feel improvement. My indentation looks much better and my curve looks better. I go back for round 3 this Tuesday and am considering stopping of doc agrees. He is going to induce erection to measure curve and indentation prior to injection. So..my two cents, if I haven't had any adverse reactions to xiaflex...I would continue. Mine took time to see improvement. It's a rollarcoaster ride of emotions. One day u feel good, the next discouraging. Keep going what ur doing, modeling, pentox, supplements and try to be patient, as hard as it is. Hang in there!

[rojenner]

I appreciate the responses and encouragement.  My symptoms are the same as before both rounds of Xiaflex injections - so far no noticeable improvement (but not worse either) 4 weeks after 2nd round.  

  I don't see the Dr until later mid May so will continue the modeling and learning as much as I can so we can have a broad discussion about options.  My expectation with Xiaflex was high so am disappointed but need to be patient and remain optimistic.

tonyode - what supplements do you take?  

Thanks!

[tonyode]

rojenner..so I had my halfway follow up yesterday as well as starting round 3 of injections. I had a 20-25 degree improvement! When I started injections, I was at 55 degrees. I am not at 30-35 degrees! My doc induced erection to measure. My indentation on the side is much, much better as well.  I know you are frustrated, as I was in the beginning. After the first couple of injections, I didn't see/feel much improvement. But this past month is when I started to see/feel the improvement. But i was cautious until I had my appointment as I wanted to see what the doc saw, said. Sometimes our minds can play games on us as far as seeing improvement, or we get stuck in the negative mindset. But anyway, my advice, keep on plugging away!  

[rojenner]

tonyode - very interesting on timing of the improvement and the improvement itself- gives me hope.   Told my wife if I could improve by 50% I could probably live with that.    I will work on my patience and optimism.  Thanks!  

[tonyode]

I would assume you obviously know the modeling/stretching is as important as anything? I am very aggressive doing this and do it much more than what is even recommended. That along with pentox and all the supplements i am taking.  

[rojenner]

I am doing the modeling and more than what mfg of Xiaflex mfg says.  I bend  downward - opposite of the curve.  Looking at the Restorex device which does the same thing.  Wish it wasn't $500 but oh well.  May wait to make a buy/not buy decision on the device until I see the urologist again in May.  

[tonyode]

I debated to buy one of those as well. But haven't yet. Check ebay for used ones, might be cheaper.  

[TonySa]

The ESL40 is an inexpensive traction device ~$40 if cost is a concern.