Fairly newly diagnosed - with questions

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Djax

I am a 35 yo guy in FL who was diagnosed with Pey about 4 -5 months ago after suddenly discovering a roundish nodule midshaft. Thinking it was the big C (cancer) I rushed an appointment to my PCP who told me he had no idea what it could be. I was referred to a uro and finally managed to get in for an appointment. He immediately diagnosed me as having Peyronie's disease and told me to start taking 1200 mg vitamin E daily, and he talked about verapamil cream or injections. Fearing shots into my penis, I opted for the cream - only to find out that it is only available in the US from one company directly (at a cost of ~$150 a month) or it could be compounded specially, for about $50 a month. I started the cream and saw my uro a few weeks later after deciding to go with verapamil injections. The verapamil liquid was covered by my insurance at no cost to me, so that was another big reason to switch to the shots, not to mention my uro told me later that the cream can take up to 18 months to work! I am 3/4 of the way thru verapamil injection therapy, going in for number 9 today. (Let me say for those curious, I have never had any pain from the injections, nor any bruising or swelling. My uro doesn't numb the penis before injecting, but I honestly only feel a slight pinch and that's it. He does between 2-4 injections into the plaque a week, with different approaches each time so as to minimize injury scar formation from repeated trauma to the penis from the injections.) Unfortunately my Peyronies Disease must be in active phase as the plaque has grown noticeably over the last week, I am having increased pain with erections, and I have developed a downward curve, which is something completely new. (I did not have a curve before, and even with the nodule, it did not cause a curve until this week... At least a curve that I noticed).  I am naturally very nervous about the fast progression of the disease. I started taking L-Carnitine and L-Arginine in addition to the vit E, after seeing them recommended on another website about 2 months ago. I also already take Ubiquinol. I have not noticed any improvement in my condition, despite these supplements. I think xiaflex would be the best option for me, as dissolving the plaque seems like the best route to a cure. My uro is not against it, but says it is very expensive (it is over $3500 a month for the medicine alone, according to my insurance). He also mentioned last week that I should consider surgery, and he said he could even try to do it without a graft but he wouldn't know for sure if he could until he got in there. I've seen most everyone here say surgery should be the last option so this worries me, but if this disease is this aggressive at only about 4-5 months in, I'm scared for how bad things could progress in the remaining months of active phase.. and I wonder if cutting the plaque out wouldn't be the best option? Would that halt the progression? Would that help in terms of potentially saving length and girth from being forever lost to this disease?

Edited: I'm also curious if anyone has an opinion on whether starting verapamil or xiaflex injections during the active phase is recommended.

Update 10/19 19:00 est: I saw my uro today for injection 9 of verapamil. I asked about the marked change in my condition, with the increase of plaque size and the new development of th ventral curve. After palpating the plaque, he feels the size increase is actually due to a blood clot from the injections. He also said the blood clot can cause the sudden curve, and that it should resolve itself in short order. He was clear in his belief that verapamil itself cannot cause Peyronies Disease to worsen, which is something I have seen many on here claim.
Another point I feel is important to make is that I spent an hour on the phone with my insurance company today regarding the cost of xiaflex. I was informed that it is not covered thru my prescription drug plan (medicare D) so I would pay full cost for the meds if I picked it up at a pharmacy, but is fully covered if administered by my doctor, and this is at no additional cost to me aside from my specialist copay. If anyone is looking into xiaflex, I strongly urge you to ensure that your claim is being handled correctly. Check with your insurance company first to verify coverage. And ensure that it is being run correctly thru your medical coverage not your prescription coverage (thru part B instead of D in my case.)
Lastly today my uro made no mention of surgery (thankfully) and said we should be patient. I asked him about pentox after seeing it discussed here, and he agreed to try it. 400 mg 3 times a day.

james1947

Djaks

1. Proposing you to read the Verapamil board, very few success stories if any.
2. Vitamin E will not make you damage but will not help with Peyronies also.
3. Suggesting you start with Pentox, low dose Cialis and VED as soon as you can, after reading the precautions regarding the treatment.
   This is the best (in my opinion) in the early stages to stop the progression of the disease and even reverse the symptoms.
4. Change you urologist.

James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

LWillisjr

Yes Verapamil/Xiaflex is most effective while in the active phase. Men with stable or calcified scarring were not selected for the Xiaflex trials.

Surgery should not even be part of your discussion until you are well past the active phase. I am surprised he/she is bringing this up so early (and I am a fan of surgery when all other options have been exhausted)

I think I would try to find a new doctor.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
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