1st Post

[Crookid]

Hello,
I'll be as brief as possible sharing my experience with this disease. I'm 51 years old, happily married for 35+ yrs, work out regularly, in  good health and live in SE Michigan.
I first experienced erection pain in april 2017
Saw my local small town URO who gave me bad info (said no biggie just apply topical cream to numb the pain and take Ibuprofen) but found I had a 2 cm kidney stone which was of great concern!
Went thru several miserable process to eradicate the stone which took about 2 months
During the kidney stone ordeal I was pretty much abstinent but did see a specialist at the U of MI. named Dr. Ohl.
He prescribed oral Trental which I was unable to tolerate...caused severe upset stomach.
During the kidney stone treatment time and while waiting for my follow up with Dr. Ohl my "friend" became bent at appx 40deg upward and 5-10 deg to the left.
I purchased the Male Edge traction device after reading  about the benefits of this therapy. I used it quite a bit initially but am not sure it was helping or aggravating the situation. The "comfort" strap was anything but that. I haven't used it in a while now.
Dr. Ohl currently has me using Verapamil cream (4mg/gm). I faithfully apply .5 mg 2x's/day and follow up with 10 mins of ultrasound using a handheld 1 mhz ultra unit to help work it in as this stuff just wants to dry up and fall off and not absorb in the penis.
The bend to the left has disappeared but no change in the upward bend.
Pain has decreased since starting the Verapamil cream but I still have one spot slightly below the glan that is still very tender.
I've been considering getting a VED but don't want to keep throwing money at this without knowing whether it will help or not.
One other thing I've done recently is I started taking L-arginine and L-citrulline. I can't believe how much this has increased my libido and blood flow to my friend. It's almost impossible to apply the Verapamil and ultra sound without becoming erect which was just the opposite before I started taking this.
I have another 60 days or so of Verapamil before the insurance will pay for Xiaflex injections which at this point I doubt I will do (unless things get worse) since I can still enjoy sex with my wife...just have to be more careful thanI was before this plague struck. Thankfully she is very understanding and supportive.
That's about it for now....I really appreciate this sight. It's just crazy how differently this affects people.
Regards!
Crookid

[TonySa]

Insurance should pay if bend is greater than 30degrees, but of course you may not want to go through it if it's not an issue.

[Crookid]

It does appear insurance will pay for it but not before I have tried the Verapamil cream for 90 days and shown no improvement.  

[TonySa]

Strange indeed as Verapramil is not FDA approved for peyronies.   You could probably appeal that requirement if you wanted.

[Crookid]

Thanks for that info Tsanchez! I'm going to call my insurance company and follow up on this.  

[betterbend]

I had to be really aggressive with my insurance company to get them to pay, emblem health.  They have criteria, which is basically the xiflex guidelines, curve greater than 30 degrees, stable for six months, palpable plaque.  I had to read the dr notes to the insurance company supervisor to agree I met the criteria.  Any way good luck, I have not read that verapamil cream works anywhere, injections are supposed to be helpful.  

[TonySa]

Good work, we must advocate for ourselves!  Pm me if you have anymore hurdles as I work in the Health industry and may have some ideas.

[Crookid]

I called my dr today and they are submitting paperwork to my insurance that will hopefully clear the way for the Xiaflex injections. She seemed pretty confident it would be approved since I've tried Trental and the verapamil gel. The gel is causing some skin irritation and itching problems. I'm very thankful for this site...the drs office doesn't freely give out info unless you ask the right questions which I wouldn't know to ask without all the good info on here! I still have a fair amount of pain when erect but it's not at the bend. It's closer to the glan and the plaque seems to be getting bigger so I'm hoping this will work!

[betterbend]

From what I was told the pain does not have to be in the bend, the nerves to the glans run past the plaque so it may push on a nerve middle of the nerve and you feel the pain at the end of the nerve.  

[mikejunior]

I wish you the best of luck with your treatment Crookid.
I am 44 and have a similar back stories. I have been optimistically battling for almost 2 years (which hopefully no one else will). My first urologist wanted to treat my Peyronies Disease cautiously and least aggressive first. I went through a series of injections for a year. Every 2 weeks, he injected Verapamil. We did 15 total. Upon the last 3 cycles, he then added Trental along with the Verapamil. With each visit and after receiving these injections, a Carboxy injection was then administered. After all of this, no improvements were made (except maybe to his wallet). I went for another opinion and this urologist thought all of this was unnecessary and possibly causing more trauma, because Xiaflex is the only FDA approved medication for Peyronies Disease right now. He asked me to stop everything and come back in 3 months for another evaluation and we would proceed with Xiaflex. I waited the appropriate time and just had my first Xiaflex injection today. It was almost painless...it was less pain then anything I had done previously. The anxiety from the anticipation of getting the injection is far worse. Hopefully I will finally see some results and hopefully you will too. Good luck and stay calm...if I can do this (cause I have a low threshold for pain)...you can. My post will hopefully give some guidance and let you know that the Xiaflex injection (first one anyway) was not painful.

[TonySa]

Crooked, pentox may help w the pain.  Also, diclofenac sodium gel.

[Crookid]

Mike Junior,
Thanks for the post! Definitely encouraging. You have really been put through a lot. That's great that the pain was minimal with the Xiaflex. My insurance company wanted me to have verapamil injections too but thanks to Tsanchez for informing me that all the stuff they were requiring wasn't FDA approved so I faxed an appeal letter and also called my Dr at the U of M. The next day my dr called and said I was approved!

Tsanchez,
Thanks for all your help! I am just waiting for my dr's scheduler to call me back and set up my injection and modeling appts. Is the pentox a gel?  Do you know if the Xiaflex will help reduce erection pain? Right now it's still tends to be a boner buster  

[TonySa]

Typo, pentox may help (oral Rx)

[TonySa]

I don't believe the Xiaflex helps w pain, except maybe long term dissolving the plaque.  I'd ask for pentox or diclofenac gel as well as treating with xiaflex.

[Crookid]

I'll have to try the diclofenac gel. I already tried the Pentox and was unable to tolerate it....severe upset stomach.

[Crookid]

I googled diclofenac gel and discovered I already have some   so I'll give that a shot. It was recently prescribed for my ankle  since oral nsaids upset my stomach.

[TonySa]

yeah, pentox  gave me diarrhea, but I just take one anti-diarrheal each day and that takes care of it.

[JohnWright]

Note: 1Seeker's post moved to its own thread topic.

[LWillisjr]

I need to close this as an introductory post. Please feel free to post questions or solicit support in the other areas of the forum.