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Peyronies Need some help

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Posted 4/12/2014 11:47 AM (GMT 0)
 

Can anyone tell me if they ever recovered from Peyronies?

Does anyone know of the best Doctor there is on this problem? Where I can go to get real answers?

I read where there is a drug coming out that is injected (Xiaflex or something like that) has anyone had any experience with this?

Thank you Al

Posted 4/12/2014 2:06 PM (GMT 0)
Hi bigal,

My husband had mild peyronies 2 times. He is a patient of Dr. John Mulhall at Memorial Sloan Kettering, who is an ED specialist and treats peyronies. The first time my husband had peyronies he wore a penile traction device for 2 hours a day and after about 3 months the curvature went away. He got the device, which is called Fastsize (the name may have changed since he bought it) through a company that Dr. Mulhall referred him to. The device is not painful to wear.

My husband got mild peyronies again in another direction and is wearing the traction device for 2 hours a day. The curvature has gotten better but is not completely straight, but he has not been wearing the extender for that long (maybe for 2 months). If his current peyronies does not become straight it would not matter because it is very minor.

The treatment that my husband received is the first line of treatment for peyronies. Dr. Mulhall's second line of treatment for peyronies was injections, but my husband did not need them. My husband was a patient of Dr. Mulhall before he developed his peyronies, because he is following Dr. Mulhall's ED rehabilitation program.

Since you had your surgery at Mt. Sinai you may live near NYC and Sloan Kettering would be convenient for you. I don't know who the "best" doctor for peyronies is, but Dr. Mulhall is a well-regarded ED specialist who gave my husband a non-invasive solution to peyronies which worked for him. He has guided my husband through his sexual recovery from surgery (he is still recovering), and is the guy that we trust for any related medical issue.
Posted 4/12/2014 10:26 PM (GMT 0)
How bad is the curve? It generally reaches a point and goes no further.

Xiaflex sounds like it holds promise but I've not heard a lot since it's been approved.

I have a mild case of Peyronies and never treated it with anything. The curve is very slight but I have to admit it freaked me out when I first noticed it maybe 4-5 years ago (pre-cancer).

There are forums for the disease that might know a lot more about the current treatments for it.
Posted 4/13/2014 1:03 AM (GMT 0)
bigal-

Dr. Mulhall at Sloan Kettering and Dr. Laurence Levine at Rush University in Chicago. Please see the link at the bottom of my signature for complete info.

-Gedman
Posted 4/13/2014 2:50 AM (GMT 0)
My understanding is that Xiaflex works fairly well but there is real danger of damaging things if it isn't used just right. There are only a small handful of doctors who have the special training to use it.
Posted 4/14/2014 7:22 AM (GMT 0)
 

Thanks everyone-- Bluebird that was very helpful !!

You husband is a very very lucky man!

 

Posted 4/14/2014 11:12 AM (GMT 0)
Bigal-

Was Dr. Tewari your surgeon at Mt. Sinai ( same as me and bluebird's husband)?

-Gedman
Posted 4/14/2014 11:28 AM (GMT 0)
Bigal- I got hit with Peyronies, almost 2 years ago, approximately 3 years after prostatectomy. I did traction pretty regularly for about 6 or 7 months and VED therapy. I also used topical and oral meds. My curve was arrested and did not get much worse, but did not go away. That along with full scale ED from PC has yet again added another challenge to our sex life. We have found ways to overcome. The best resource for this disease is peyroniesforum.net Regards Inkhorn
Posted 4/14/2014 2:14 PM (GMT 0)
Bigal...

I had Peyronie's with TRIMIX....(pretty serious, too).. Had the URO drop we down to a different prescription, and now the Peyronie's is very slight...

 

Posted 4/14/2014 2:58 PM (GMT 0)
One other thing I forgot to mention about Xiaflex. It is only approved for men whose curvature exceeds 30 degrees. Again, this is a case of making sure the benefits outweigh the risks.

Post Edited (PeterDisAbelard.) : 4/14/2014 1:08:09 PM (GMT-6)

Posted 4/14/2014 5:05 PM (GMT 0)
My friend took Trental and Vitamin E, along with traction. He said it improved somewhat after about a year.

- Allen
Posted 4/15/2014 12:13 AM (GMT 0)
Has anyone gotten peyronnes that hasn't used trimix .? Isnt this the obvious cause ?
Posted 4/15/2014 8:55 AM (GMT 0)
 

Thats a good question -- like the chicken or the egg. Does the trimix cause the Peyronies or because you dont get a ridgrid erections without the trimix you don't know if the Peyronies would be there anyway. It only seems logical that inserting a needle into a complicated organ would cause some kind of injury after awhile doesn't it?

I stopped using the trimix the moment the freaky Peyronies showed up. I have heard Dr's have said that the trimix does not cause the Peyronies , but I'm skeptical now because I have already been mis informed or mislead a couple of times by Dr's so it's hard to fully trust them now. That's why I asked you guys for soem answers.

 

Posted 4/15/2014 2:03 PM (GMT 0)
I certainly would vote that TRIMIX causes it.....pretty obvious from my experience
Posted 4/15/2014 4:41 PM (GMT 0)
Bush , wait you had surgery 12/13 a month after me and already was put on trimix and already
developed peyrionnes all within 4 months !
Posted 4/15/2014 5:23 PM (GMT 0)
No...DX'd in 2012....Had surgery Feb 2013

I don't think any nerves spared...so pretty quick I was on the TRIMIX...and just as quick had Peyronies....

( almost a typo in my signature ) I'll retype it !

Posted 8/10/2015 5:06 PM (GMT 0)
I know this is an old thread, but since it's on topic, I thought it best to add here.

I'm 10 months post D RP just as I turned 48, both nerves spared, no margins. I took Cialis 5mg for 6 months starting on week four before moving to Sildenafil as needed this spring. I suppose the Cialis perhaps helped, but I never got the results like I do with Sildenafil. I'd guess around 70% now, but I have a definite curve to the right. I wouldn't say it's extreme, but it was surprising to say the least. I've avoided trimix because of curvature concerns, but it seems I've got it anyway.

Does this improve as the healing process continues? Previous to this I never had any ED related problems, FWIW.
Posted 8/11/2015 1:25 AM (GMT 0)
Thurman,

Peyronie's does not improve on its own. There are treatments, which vary in success and vary in type, depending on the amount of the curvature.

Most Uros know close to nothing about treating Peyronie's correctly. Follow the link in my signature to find the Peyronie's Association, and use one of the doctors they recommend. If at all possible, see Dr. John Mulhall at Sloan Kettering in NYC or Dr. Laurence Levine at Rush University in Chicago.

Gedman
Posted 8/11/2015 2:08 PM (GMT 0)
Thanks gedman, your linked thread would make for a good sticky IMO.
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