xiaflex experience in MA

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

Flipper

I first sought treatment for a 45 degree curvature in 2011 or 2012. The urologist gave me topical verapamil and that had no effect. When I read about FDA approval for xiaflex, I called the same urologist and he said he would set it up with my insurance and the manufacturer.

It all came together last month and I had my first series of injections on a Thursday and Saturday. The swelling and bruising was terrible, but the pain was not too bad. The doctor told me that he had not seen bruising as bad as mine. He sent me home with the flyer from xiaflex on how to stretch the penis and no further discussion about the importance of that.

After the first round, it took a few weeks for the swelling and bruising to go down and I noticed some improvement in the curvature, but an increase in lateral curve. Overall I thought the results were promising enough to continue with a second round.

This past Monday, I had the first injection of the second round and I immediately got severe blood blisters. I took the bandage off that evening and almost passed out. I called the doctor and asked if I should go to the emergency room and he told me not to, that he would examine me Tuesday morning. He checked it out Tuesday morning and said he had not seen blistering that bad before. He prescribed me antibiotics and pain medicine.

It's now Saturday morning and the blisters have ruptured and have been bleeding for four days. I'm in moderate pain, and have been unable to work. This is a disaster. I was scheduled to have the second injection Wed but when the doctor saw me Tuesday, he pushed it to next Wednesday. The way I feel today, I don't think I will continue the treatment.

I just found this forum and wish I had seen it before I started xiaflex. I don't think my doctor has done a good enough job discussing the treatment.  

nemo

I'm a little concerned about a Uro prescribing topical verapamil (which has been debunked for several years now) who is also injecting Xiaflex.  It doesn't sound like he knows what he's doing - and your results aren't making his case any stronger.  

You might seriously consider finding a new Uro.  

Best,
Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

james1947

Flipper

Get to the ER immediately!!! 4 days of bleeding is not a thing to be taken easy!!!
And I second Nemo, find a competitive uro that knows what he is doing!!!

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

kdb123

I have had a similar devastating experience like flipper by my doctor in boston. Flipper, maybe we need to compare notes offline

james1947

I am expressing my opinion from the first publications of Xiaflex results and I didn't changed it:
The success of the Xiaflex treatment is directly related to the doctor capability to perform the treatment correct!!!
I would like very much that each forum members that had the Xiaflex done to post his doctor name together with the results.
I will ask a forum member to volunteer his time and make a compilation with the forum Xiaflex experience, same as I made for the Priapus/PRP injections and Pentox in the past.

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

goodluck

Great idea!  

I know that often the Doc's are trained by the Drug Co Sales staff and that is it.

I have heard of cases where the sales reps have had to walk a Surgeons through surgery procedure.

I know this is not complicated surgery but it certainly takes sound training, deep understanding, a knowledge of what can go wrong and what to do when that happens.  It sounds like Flipper's doc did not take his post procedure symptoms very seriously.

Flipper

Update 8 days after injection-

The blood blister broke. As the blister heals and scabs over, it breaks the skin again every morning as I get a nocturnal erection. Still moderate pain. I continue to apply topical antibiotic and dress the wound. The rest of the bruising and swelling is going down, so that's good, although now I notice that the area under the injection sight is a hard lump. Did I just not notice that before because of the swelling or is that a worsening condition? I'm not sure.

I went back to the doctor yesterday for an examination. He said there is no sign of infection, which was his major concern. He thinks the healing of the blister will be a few more weeks, so that's not good. This has been a horrible and painful experience.

I'm in the process today of trying to find another urologist with xiaflex experience who can see me on short notice during this acute phase, but no luck so far.

james1947

QuoteI'm in the process today of trying to find another urologist with xiaflex experience
Good approach Flipper :)
Wish you success finding one soon.

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

MikeSmith0

Was it Dr. Morgentaler? I had a bad experience with him...so just wondering.

It amazes me that doctors barely flinch when they put patients - and their PENISES through this.  This is serious and they are so cavalier.  "Oh I was worried about an infection"- really? What about a penile fracture, long term impotence, a hematoma that gets stuck for 6 months, etc... And, a penile infection isn't a minor issue - he should have given you an RX for topical antibiotic cream...specifically bactroban...rather than taking the approach of "wait and see if he gets infected".

Sorry you went through this...hope you're doing ok.