PDI5 Inhibitors + SERM seem to have a combined effect in the acute phase of the disease lowering final curvature!
I was researching on my own and was one step before taking off label SERM in January, but was too afraid of the eye related side effects it has...
...too bad, this would have directly been at the start of my new active phase so no one knows if that would have stopped is early...
I am trying to understand what the natural progression of this disease is for my case (young, no penile fracture, 2 plaques, related disease, family genetics, ...).
I found this study interesting as it provides an estimate on how the disease develops naturally depending on ultrasound result.
The study is especially nice as they exclude penile fractures—so it is more relevant to the "genetic, started out of nowhere" variant which I believe is different to scarring after penile fracture.
What I found super interesting is that when there is no shadow (no calcification?) there is a high chance of natural improvement over the follow up period?!?
Thinking about this and traction and other therapies it is super difficult to design studies and to rely on anecdotal result of therapies. I mean they would need to drastically classify patients to find similar cohorts.
Also this would allow shady studies to put more single lesion people in the group of their treatment and they will see a X% better outcome for them.
What I understand is that based on the study if you have a lesion without any shadow then there is a higher chance of it improving. If you have a hard calcified plaque then there is almost none. So I think this is something I will discuss with my uro as he avoids ultrasound (he says it makes no difference in treatment) and the ultrasound would be helpful for me to decide between an actual wait and see or conservative traction therapy treatment vs. surgery.
Hi, as I am just have the next active plaque 5 years after my first onset I am curious if there are patients that also have the disease started when they were younger (<40yo) and now are older.
I am especially interested in those who have related diseases Dupuytren's Disease or Morbus Ledderhose.
I still don't know what the natural progression is for such patients and what treatments worked for them. e.g. I am especially interested if implants worked for them for good or if they got more and more plaque that even the implant could not fix.
If you know about patient reports on this from other places it would be very helpful.
Thanks
Today a kid did run into me with full thrust and hit me down there.
Full anxiety attack... These moments are horrible with this disease. Without it I would just think: "Ouch, this will hurt for a day or two". Now I think this will put the nail in the coffin and trigger the next plaque. Two years of more burning at another spot, more deformity, again no real therapies for active phase... More anxious looking down there every Morning to see if it changes. I hope it will not trigger the disease again.
I had a lot of crap in my life that was a mental struggle, but this thing is really the tip of the iceberg when it comes to mental pain and anxiety and it hits again and again, often right after I think I managed to be OK with it.
I really consider getting an implant to be done with it. I understand that with an implant the internal stretching will combat any plaque.
I feel with anyone who is in a similar episode of anxiety right now....