Xiaflex - was mine done wrong?

[peyre]

I had my first Xiaflex injection yesterday, and it was awful!  My urologist injected it from the far side--he pushed the needle through the width of the penis to inject the drug from the inside.  That just doesn't seem right, and the REMS Training Guide (http://www.xiaflexrems.com/downloads/RMX-00012-XIAFLEX-REMS-Training-Guide-for-Peyronies Disease-%285%29-%281%29.pdf) says to go in from the side, not straight in.  It doesn't say not to go in from the inside, but I'd think that should go without saying.  Having the condition, we already know my Little Man is apt to produce excess scar tissue, isn't it just asking for trouble to push a needle clear through both corpus cavernosa?  

Does anyone know anything about this?  Is it done this way in certain conditions and I'm one of the unlucky ones who has to have it this way, or am I getting it done the hard way when it shouldn't have to be like this?  I IMed him this morning asking if the other treatments would be like this, and he said that this is the only way it's done.  Since the guide above says different, that rings alarm bells in my head.  Given that and the unpleasantness of what I went through the first time, I'm considering discontinuing treatment.  Anyone have any advice?

[hope4all]

I'm leary to say he is doing it wrong. I'm trying to understand your terminology so I went back to a post when I responded to someone else within the Xiaflex board. I said this, "With Xiaflex I don't think the needle is suppose to pierce through the opposite wall of the plaque when transversely injected...so the medication can stay within the plaque and not seep out as much.  At least that's how I understand the literature."

I have little confidence in the list of doctors the manufacturer provides as being approved to administer Xiaflex. I'm not sure what training they got but I think many have forgotten it and need a refresher. Several here, including me, experienced firsthand  the shortcuts some doctors are taking when it comes to the REMS Training Guide. From not marking the plaque prior to injection, to not doing the in-office modeling.

The manufacturer or distributor should be surveying each patient afterwards or at least asking if we want to be part of a survey about our treatment. They would find out that doctors are all over the place when it comes to how they administer Xiaflex. My guess is it's too time consuming for some doctors to do ALL of the recommended treatment and it doesn't pay well enough.

[peyre]

Ooh.  Yeah, come to think of it, there's been no inspection of it while erect and the doctor didn't mark it; he felt for it and worked out where he thought it was and how best to get to it.  I do know he's new to it; he's just now starting up the Xiaflex program at Kaiser's Morse facility in Sacramento and recently attended the training for it.  I don't know that I'm his first patient, but I'm definitely one of the first.

If I was unclear on this point, he pushed the needle from the far side straight through both corpus cavernosa to get to the plaque.  I can understand how that would make it easier: you use the tensile strength (or whatever) of the skin on that side to hold the plaque and brace it while you get the needle in.  But I'm worried that puncturing all those tissues is a good way to encourage the formation of more plaques.  Plus it was distressingly painful!

[hope4all]

Yikes, it does sound painful. My injections are mildly painful but very tolerable. In my last cycle he told me to help him out by stretching my penis as far as possible so he could work with two hands. I could feel and see him trying to work the needle through the plaque and finding the other side of the plaque to begin releasing the Xiaflex. He had enough Xiaflex to hit two spots.

To his credit my plaque is very palpable and he gets in there pretty well and seems to stay within the plaque as recommended. I also show him recent pictures of my erect penis right before the injection to give him a better understanding of where the curve starts.

You should notice your plaque getting softer or spongier within the first week of treatment. It's really important during this time that you do the stretching and straightening. I've noticed the hardness of the plaque returning by week 3 or 4.

I'm starting my third cycle tomorrow and hopefully will have the 2nd shot on Thursday or Friday.  Here we go again.

Best of luck peyre.

[peyre]

Thanks!  It's only about 34 hours since the treatment and I'm still swollen and purple all down the shaft (though it does seem to be getting better now), and the doc said not to start the stretching until he said so.  I'm all for delaying at this point since it's very sore too--feels like a needle jab if I press on it in the right spot.  But I'm seriously considering canceling my other appointments and putting a stop to this now--partly because of the discomfort and partly because I've started to wonder if he really knows what he's doing, or maybe I should say I'm wondering if he's doing it wrong and I'm taking an awful risk of making my condition worse by continuing.

[Ive]

All I can say is this is definitely not the way it was done by our Uros in the UK.

In my opinion this method creates a huge risk of penile fracture!

[james1947]

peyre

Hope the best for you and maybe you should continue with an other doctor.
Please give us the doctor details, I may add your experience to the doctors list.

James

[peyre]

Thanks fellas.  I've been agonizing over this for the past day or two and it's good to at least get some confirmation that this isn't the way it's normally done.  It just screams "wrong" to me (I agree Ive, re. penile fracture), plus I dreaded going through that again at all, let alone twice.  Plus, though it's gradually getting better, I'm not sure it's supposed to still be swollen and bruised 48 hours after the procedure.

I've called to canceled my appointments, saying I'd like to discontinue treatment.  It's a weight off my mind; I just hope it's the right choice.

James, I've sent you the details by PM.  

[LWillisjr]

I've never heard of this method before. My experience the needle/injection is done on the same side. Simply through the outer skin layer and directly into the plaque formed on the Tunica.

[peyre]

I've never heard of this method before. My experience the needle/injection is done on the same side. Simply through the outer skin layer and directly into the plaque formed on the Tunica.

That's what I'd expected!  Imagine my surprise to feel the pinprick on the far side.  When I sat up in alarm and protested, he told me it wasn't a matter of where the plaque was so much as of how to get at it.

[hope4all]

Peyre, I think you are doing the right thing, this does not pass the "smell test" for me. You should contact U.S. Bioservices and Auxilium about this. I'm really disappointed in Auxilium for not having a program in place to monitor doctors who administer this stuff. They give them the REMS protocol and one training session by a sales rep and they are put on a list of approved doctors?!

I've said this here as have others, it's early in Xiaflex's existence, and we early adopters are basically still part of the trials.

Will my curve reduction be less because my doctor doesn't do the in-office modeling? Does it matter that I'm doing traction immediately following my injections and not telling my doctor? I will tell him when I've completed all the cycles. He wasn't a big fan of traction when I mentioned it in my initial consultation, thus my reluctance.

My experience has been that the plaque is very pliable/soft within the first two weeks. It makes sense to me that traction would help stretch and straighten the plaque. By week 3 or 4, I can feel the plaque hardening again, although it does seem smaller and my curve is slowly reducing and my girth has returned to pre-Peyronies Disease!

My doctor also said having pictures of my erect penis in three views, both sides and dorsally (upward curve here) is very important to him prior to each cycle. I think the standard treatment is to induce an erection, see the curve, mark the injection areas, reduce the erection and inject the Xiaflex. That's A LOT of needles and time. I take the pictures of my erect penis the night before the cycle begins. I'm of the mindset, the less needles into my junk the better, especially since I'm probably more prone to scaring. The only needles that go in my penis are for Xiaflex. I had the initial ultrasound which required the erection and de-erection shots but none since and NO numbing shots prior to the Xiaflex. My advice would be to skip the numbing shots if offered and soldier through the temporary pain. They'll be lots of discomfort when the numbing shots wears off anyway...

Sorry Peyre, I haven't read all your posts, but if you let us know what city you live maybe someone will chime in on a good Xiaflex doctor.  Good luck.
Hope4All

[peyre]

Thanks, hope.  I agree--and the more I think about it, the more I'm convinced I was right to put a stop to this.

Wait, there are numbing shots?  I was told there wasn't really anything that can be done to numb the area--then again, we're talking deep inside in my case, so that was probably right.

It's been close to 3 days now and I'm still kind of purple, and very sensitive in one spot.  Last night and the night before I woke in the early morning hours with an erection... you know how we can tense a muscle that affects Mr. Happy?  Makes an erection stronger etc.?  When I have an erection these past two mornings, tensing that muscle--OH MAN, was that painful!  It's like a needle jab on my plaque side.  I expect this too will pass fairly soon, but yow!  I'm hesitant to try stretching exercises or anything right now for fear of causing damage, but once I've healed, maybe I'll consider vacuum or traction therapy.  I just wish I had some reliable information to go on to help choose between them.  When I asked the urologist, he said simply that he had no opinion about either.

[hope4all]

For better or worse I think I might have a high tolerance for pain. Peyre in my opinion, and that's all it is, it's important to do the stretching exercises even when your penis is red and swollen. The ones prescribed by the manufacturer. Of course, you won't be able to get the stretch you would if it weren't so swollen and that is fine as long as you do something, to the point you can tolerate it and no further.

When it's bruised and very tender to the touch is when the plaque is the softest.  PM me if you'd like to see a photo of me after my last cycle. Very very scary looking but I did not stop the exercises and did the straightening exercises whenever I had those nighttime erections, which in the first few nights woke me up out of sound sleep from the discomfort.  The acute redness and swelling lasted a few days and then slowly dissipated until it was back to normal in about 7 days.

I had my 1st shot of my 3rd cycle yesterday, and within a few hours the bruising and redness started. This hadn't happened in the first two cycles. The swelling always came after the second shot. I was worried because my 2nd shot was for this morning and there was no way I could have tolerated another shot so soon. The doctor agreed. He was about to get the vials out of the box when I told him to stop and exam me first. His reaction, "whoa, let's reschedule for next Wednesday, when the swelling has subsided".  

In this last injection he got as much medication in the syringe as possible and released it in 3 different places, thus the intense bruising coming on so quickly.

Yesterday was my 5th shot and my doctor has always stayed within the plaque as much as possible, from what I can feel.

When I received verapamil shots early on in my diagnosis, the numbing shot definitely worked but very painful going in. The needle was large and i felt it to the point I would bite on a towel. But it did numb my penis completely! The verapamil shots are much different than Xiaflex. There is more solution released into the penis with Verapamil. It's also much more violent. I remember my doctor going in with the needle and staying in there stabbing into the plaque and moving it around the plaque trying to break it up. I couldn't feel a thing, but could hear the needle going into the tough and fibrous plaque. When that numbing shot wore off in a few hours...man talk about pain.

Hang in there!

[peyre]

Thanks hope.  With your encouragement, I just performed the 30-second stretch technique.  It was kinda painful--that sharp needle-like jabby feeling is what worries me--but I was careful how hard I pulled.  I think I'll continue the stretches as if my doctor had said to go ahead with them, rather than wait till he gives the go-ahead (when in fact he's only ever contacted me when I emailed him first).

[hope4all]

Good to hear Peyre. When I received the very first Xiaflex shot, a couple of hours afterwards I could feel very brief sharp stabbing pains within the plaque. It felt very odd but also very comforting that xiaflex was beating the crap out of my plaque, telling it to get the F~@< out of my dick, that its days were numbered here.

I try to think of this every time I receive a shot of Xiaflex. I felt that same fleeting pain yesterday after my 5th shot and I smiled.

[peyre]

Ok, good to hear that stabbing pains are common following the procedure.  Should I still be feeling them 3.5 days after the procedure?  I'm guessing that they're lasting so long because the extreme method of delivery of the drug is going to make the area take longer to heal, rather than that there's some permanent damage done.  Taking longer to heal is fine.

I'm so glad I canceled my appointment for this morning.  I can't imagine having that done again, especially still being swollen and sore.

[Head Up]

Peyre -

Based on my two shots, you should definitely NOT be feeling stabbing pains 3.5 days after your shot. Maybe soreness when you do you prescribed stretching exercises or during traction, but not what you're describing. Good luck sir

[peyre]

Thanks.  It's been a full 4 days now and I'm starting to feel more normal down below.  And hope's suggestion to start the stretching seems to be helping it feel better too.  I think I'll just be glad I dodged a bullet in not taking my doctor's word on this without doing some critical thinking and fact checking.

[skunkworks]

I would not be going back to that doctor, if I have understood your description correctly that sounds barbaric. Sorry you had that experience

I'd also try to get in touch with the xiaflex people and see what they say about it, they do have a USA contact number.  

[peyre]

Quote deleted by moderator - James
Please obey the forum rules!!!
I might do that.  I have a bit of a dilemma about the first point though.  It's been almost a week now, and when I get an erection (at night, I avoid them while awake), I get intense stabbing pains on my plaque side.  I get the impression that's not normal so long after the procedure.  The natural person to go to is my urologist, but I'm not sure how much confidence to have in his judgement on this one, given what I've mentioned before.  Still, who else is there to go to?  My GP will probably just refer me back to him.  I suppose I'll email him later today, unless someone here thinks I shouldn't.

[skunkworks]

If it were me I'd have a search through xiaflex threads to see if anyone had seen a doctor local to you and had a good outcome, and go to them. Rarely is there just one option unless you're in an out of the way area.

I'd also post my general location here, to see if anyone had any recommendations.  

[peyre]

Quote deleted by moderator - James
Please obey the forum rules!!!
Tricky.  I'm with Kaiser, and I think Kaiser is late starting up a Xiaflex program.  My urologist just started the local one at Morse, specifically in response to my (and possibly others') interest in it--so I don't think there's a Kaiser Xiaflex nearby.  I'd hate to go outside of plan (though I may if I have to).

[peyre]

O...K...  I'll be very judicious about use of the Quote button then.

All right.  I thought for a start I'd at least contact my urologist and see what he said about it.  He wrote back that this is normal and will dissipate with time.  In the meantime, the past couple nights I've had an erection but found that tensing the PC muscle doesn't seem to give me that stabbing pain: it hurts a bit, but much more dully and more bearably.  Sounds like he may be right about it going away with time--just it might take a bit longer due to his extreme method of delivering the drug.  I guess for now I'll sit tight and see what happens.

[peyre]

I just called the manufacturer and spoke with someone in their medical department.  He said that while going in from the side of the plaque is normal, it's up to the doctor's judgement how to administer the drug; especially when the plaque is partly on the underside, like mine, alternate points of entry may be called for.  Harrumph.  

His reaction wasn't the dropped-jaw shock that I half expected; he didn't outright say it but I got the impression that performing the injection from the far side, right through the corpus colossa, isn't unheard-of.  He didn't even recommend any extra precautions beyond the stock ones from the handout.  He did take my name, my doctor's name, and asked some questions about swelling and bruising, etc. (both gone now).

[Ive]

Who is the manufacturer that you refer to?

The original treatment guide from the REMS Guide completely contradicts this:

The penis should be in a flaccid state before Xiaflex is injected. Place the needle tip on the
side of the target plaque in alignment with the point of maximal concavity. Orient the needle
so that it enters the plaque from the side, NOT downwards or perpendicularly towards the
corpora cavernosum.

http://www.xiaflexrems.com/downloads/RMX-00012-XIAFLEX-REMS-Training-Guide-for-Peyronies Disease-%285%29-%281%29.pdf

[peyre]

Quote deleted by moderator - James
Read the forum rules

The manufacturer of Xiaflex.  Funny, I can't seem to find the page I was on earlier, but I dialed their Contact Us number for questions about the drug.

Quote deleted by moderator - James
Read the forum rules

I know, right?  I even referred the Dr. to that document, and he replied only that the way he did it is how it's always done.  It sounds like I have a whole forum who can contradict him on that point from personal experience.

[peyre]

Aw, dangit!  I forgot about the quote rule.  Sorry about that--it's force of habit from other forums.