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Combination Of Medication, Including Pentoxifylline, And VED Therapy
I'm in my early 40's and I live in California. I was diagnosed with Peyronie's in March 2013. I'm currently taking: Pentoxifylline, Colchicine, L-Citrulline, CoQ10/Ubiquinol and Vitamin D. I’m seeing Dr. Gelbard in Los Angeles and Dr. Lue in San Francisco. They've both performed ultrasounds.
I noticed curvature in March of 2013. There was no pain. I saw a urologist who prescribed Pentox, L-Citrulline and Cialis. Unfortunately, I opted against Cialis because I have partial hearing loss and can't take chances of additional hearing loss from Cialis (the probability is low but it does happen). This decision was very difficult for me.
In my ongoing research and found an interview with Dr. Lue. I scheduled an appointment and saw Dr. Lue about 4 1/2 months into all this.
He did an ultrasound and confirmed the diagnosis, and increased my Pentoxifylline to four pills per day (from three). He mentioned that he sometimes goes higher with Pentox dosing, but at my body weight (light) he didn't want to go too high.
These 4 to 5 months my condition appeared stable. But as time progressed, I noticed increased narrowing and shape-shifting, as well as more pain during night-time erections. I suspect there’s been length loss which has continued. It's now almost a year later, and I still often have pain with night-time erections. The narrowing appears significant to me, and makes me worry about stability/buckling during intercourse and thus further injury.
At the 6th month I discovered Dr. Gelbard's website. He answers patient questions on the forum section of his site, and I found his information to be helpful: peyronies.org . I wanted another doctor who specializes in Peyronie's and who performs ultrasounds. Dr. Gelbard also happens to be one of the doctors who participated in the trials for Xiaflex.
About 3 months ago, both Dr. Gelbard and Dr. Lue told me to start Colchicine (Colcrys). And two months ago, they started me on VED protocol. I was doing VED therapy everyday but I recently bruised my glans pretty badly (even though there was zero pain while pumping). The bruising and discoloration is still significant so I haven't started back up on the VED. I now think a trip to see Dr. Levine in Chicago makes sense to discuss traction as an alternative.
It's now almost a year since this all began. Like I said, the first 5 months I thought things were stable. But it's now clear the deformity has progressed, especially the hour-glass narrowing and some length loss. I still have pain with night-time erections.
So that's my story. I welcome any correspondence whatsoever. And if anyone has insight regarding the bruise to my glans from VED, I would appreciate knowing your thoughts. Two weeks ago the doctor said it should resolve - but it's still prominent and really dark. I'm obviously concerned about this.
Many thanks to Birgir for maintaining this site and to all of you who are offering yourselves to the rest of us dealing with this.
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