Two shots down, six to go

[Head Up]

So I had my first two xiaflex shots done this week. The first was Monday and the second was yesterday. Dr Levine's assistant Gina is the one who performed both shots. I didn't see Dr Levine once for either shot. I had no numbing shots, nor do they offer any. I wouldn't have wanted them anyway. The pain of the actual shot is pretty intense but is over with in less than 10 seconds.  

After the first shot, she told me to hold a gauze pad with pressure over the needle hole and to leave whenever I was ready. I waited about 5 minutes and then left. I can't recall whether she told me to start the stretching and traction that day or wait one day, but I was doing the stretching later on that evening and while the pain was intense it was tolerable. That first night I noticed that my penis was rather bruised and swollen, but only on the one side where the shot occurred. By the next day the swelling had come down a bit but the bruising was a deep purple. On Tuesday I did the manual stretches several times (sheet she gave me said to do it 3 times only) and also gave traction a try for maybe 3-4 hours (not the 6 hours that was suggested).

On Wednesday when I went in for the second shot, there was still significant swelling. Enough for me to ask her if there would be trouble locating the plaque. She said no and that it could still be felt. The second shot was equal in pain to the first I would say, although my penis didn't get as swollen afterwards. Again, hold the gauze for a few minutes then feel free to leave whenever I was told. Gina did recommend that I not do any traction or stretches that day because my lil guy looked a little beat up still from the first shot. I did take some Clonzepam to help ease any anxiety receiving the shots may have caused. Tomorrow I go in for a short modeling appointment. I was able to do the stretches today and also some traction as well. My penis does not feel as beat up today as it did on Tuesday after the first shot.

Gina told me I was somewhere around the 10th or 15th patient they've treated with xialflex. I can't remember if Dr Levine took part in the actual trials at all. I do find it a bit strange that a renowned Peyronies Disease specialist has his assistant doing the shots on his patients and not him. I know she does the Verapamil injections too although I never went that route (thank god!).

She did say they had one case of penile fracture so far. She didn't go into too much detail but said it occurred when the patient had a morning erection. I didn't ask if he had rolled on it or anything like that. I probably should've asked for more details. Once I heard this I discontinued all oral meds (Cialis, Citrulline, Grape Seed Extract, and CoQ10) that I've been taking to help induce erections and am just going to stick with manual modeling and traction until at least the 10 day mark.   At that junction I will most likely re-introduce the meds without waiting until the 14 day mark (when sex is allowed again) depending on how I feel.

The moral of the story: so far, all is well. I will ask for more information on how the other patients are faring with xiaflex and try to get more details involving the poor guy with the fractured penis. If anyone can provide any insight, noteworthy comments or suggestions on having the best response to this medicine, please do! And of course, I will continue to update as the treatment progresses. I am looking forward to the 6 week break (actually 4 because the next 2 weeks will suck with no sex!) before round 2, that's for sure!  

[nemo]

I'm a little surprised, as well, that Dr. Levine is not doing these himself. But good report, and keep us posted.

Wishing you the best,
Nemo

[hope4all]

Thanks for reporting Head Up. I'm glad you feel confident enough in his assistant. I would want the doctor who initially consulted me to do the shots. If my doctor had another doctor come in or let's say the doctor called in sick and had another perform it, I would probably pass and say call me when MY doctor is the one doing it. I had my 5th shot on Wednesday morning.

I woke myself up a couple times Wednesday night because of uncomfortably hard erections. I don't sleep on my stomach and I don't sleep with underwear so hopefully that helps. I did do the straightening exercises but didn't go too far or too straight for fear of rupture as you mentioned of another patient.

The doctor postponed my 2nd shot scheduled for today because I was too swollen. He'll do the 2nd shot next Wednesday when the swelling is gone.

The shot yesterday resulted in bruising, swelling and redness within a few hours, something I usually get on the 2nd shot of the cycle, or at least that's how it's happened in the first two cycles.

My doctor was training another doctor yesterday, and it was very interesting to hear him talk out the whole process during her training. He asked if I would mind having a female doctor observe and help with the injection. He said he's trying to convince more of his colleagues to use Xiaflex. It's not a money maker for the doctors like other urological surgeries and that's part of the problem. Sad but true, here in the States.

Anyway, he mixed the solutions as I watched and gave his opinion on how they could make the bottles better and there being extra solution left, can't remember completely, all i know is that he was complaining about something, and that he would like to get ALL of the mixed solution out but is unable to, due to the rubber being too thick and the needle not being right.  I guess there is leftover solution that he would like to give to indigent patients or those who can't afford it, but that's not possible once you mix it.  Auxilium says you should get a certain amount in the syringe but he always gets more, I think he said something like .3.  He also mentioned that the needle could be narrower...or something about the needle not being optimal for the application.

He told me to grab my glans and pull it to a full stretch so he could use both hands to feel the plaque and do his thing, same as past visits. He said to the other doctor that it's extremely helpful that I brought pictures taken the night before of my erect penis in 3 views (both sides and dorsally). He entered the plaque and then had her put her hand over his on the syringe so she could feel the resistance of the plaque and feel when to stop before releasing into he plaque. I remember him saying "feel that, see how tough it is?" He released it transversely through the plaque and then found a couple more spots and did the same. He says he gets more than the recommended amount out of the solution and is able to get more Xiaflex in a few spots if needed.

[Head Up]

i have faith in Gina because I know she's been doing Dr levine's dirty work for some time now. By this I mean performing the verapamil injections which I'm sure she has done hundreds of, if not thousands. Although they're two different medicines being injected, the idea behind them is the same. Inject the medicine directly into the plaque. Today I had modeling which was extremely short and uneventful.

When I go back in 6 weeks I will have a list of questions to ask. Two of them are: Why doesn't Dr Levine perform the injections himself? Gina, how many verapamil injections have you executed? My other questions will pertain to the gentleman with the penile fracture. I forgot to ask about those today. So, expect another update in a few weeks after I'm able to examine my own erection and see if there has been any benefit and then about 4 weeks after that when I go through round 2 in early June. Take care everyone and have a great weekend!

ETA: Once I get more comfortable with the process, perhaps I will have her attack a different plaque as I have a few but the one we're assaulting now is the most problematic. The idea of getting two shots in one sitting just doesn't mesh well with me right now! Although with my next appt, I'll be getting 3 shots total. One to induce an erection for measurements, one to bring it down, and then the xiaflex shot. That is going to really f*****g suck. But I'm a strong lad and will deal with it just fine with a mind over matter approach. The clonzepam helps! LOL

[nemo]

Yes, I didn't mean to cast any doubt over the quality of Dr. Levine's asst., I only meant I was surprised in the sense that this is a new treatment, and I kind of figured a field-leading specialist would still be reveling in the "cool factor" of administering the first FDA-approved injectable treatment for Peyronies Disease.  But given his assistant's experience, there may be no practical difference in getting them from her or him.  

Nemo

[hope4all]

I agree Head Up, if she's done verapamil shots and I'm sure she's done several hundred, she is well qualified to inject Xiaflex. Every plaque is a little different she has probably felt them all!  Good luck and please keep us informed on your progress after the swelling comes down. Early results are interesting to hear about.

[Head Up]

The swelling is totally gone, and the bruising has greatly subsided. I imagine in a few days it will be completely gone. I just have to stay on top of using that traction device. Six hours per day may be difficult to achieve, but I will at least get four in for sure. Stretching the plaque out is imperative in the straightening process!

[Head Up]

So I finally had round 2 of xiaflex earlier this week through Dr Levine's office with his PA Gina administering the shots. Shot #3 went well with absolutely no side effects whatsoever. No bruising, no swelling, no pain, etc. Prior to receiving the 3rd shot I had to get 4 shots in the penis for erection inducement so my progress could be measured. Took two shots to induce the erection, and two to bring in down. Not fun! My initial curvature before round one was 40 degrees up and 30 to the left. Prior to round 2, I had improved to 30 degrees up (25%) and 20 to the left (33%). This was very promising and welcome news. I could tell that things were a little better but really didn't have a full idea without proper measurements taken.

Shot #4 f'ed me up pretty bad guys. The shot was very painful and just felt a little wrong or different from the previous shots. Almost like it was misplaced or injected into unwelcome tissue. I didn't have a chance to look down there until after my shift at work that evening, and holy cow I almost fainted when I saw my penis. It was a deep/dark purple throughout the entire shaft and about twice the size. It was also painful to the touch. The swelling/discoloration after my first shot was nothing compared to the 4th shot. Here I am 3 days later with a penis still a deep/dark purple, with reduced swelling (maybe 110-125% of normal), and sensitive to the touch (but no constant pain). Since I didn't call until Friday afternoon at closing time, I was unable to get in for a checkup. I am supposed to email pics of my embattled penis and go from there.

To sum things up, I don't think I will be going forward with anymore shots after this due to the bad reaction of the 4th shot. If things clear up quickly (the discoloration and swelling) and I do have more noticeable improvement, I may say F it and go for the third round but that all depends on the outcome of round 2 and the healing process. I will post an update sometime next week. Take care all...

[Lucketts]

If you get more shots, any chance that you could (tactfully) ask Dr. Levine to do it?  I'm sure the PA is good, but this is some serious stuff, and one size doesn't fit all.  Sure would make me more comfortable if a urologist who does surgery and understands the inner workings of the unit did the injections.

[james1947]

Head Up

I understand your pain, frustration, etc', but you have to measure the success based on the results, nothing else.
Just a my 2 cents.

James  

[ozonedoctor]

https://peyronies-disease.xiaflex.com/hcp/curvature.phpd

what is fascinating is the steep improvement curve of placebo in both studies and the fact placebo catches up with xiaflex on second graph.
I do think you should continue to observe with patience and study the literature if you have the time.

[lonelyboy]

Gives page not found for me, maybe it's medical professional only or USA only?
Can anyone get a copy please?(legally?)
TIA
Lonely

[Lucketts]

The page on what seems to be the Xiaflex web site doesn't come up for me either.  Says "page not found".

[james1947]

404 Error Page
The page you're looking for cannot be found
What come up is:
https://peyronies-disease.xiaflex.com/hcp/curvature.phpd
Belongs to Auxillium

James

[ozonedoctor]

I am attempting to upload a graph. Hopefully works

[ozonedoctor]

it looks like it worked; that is one of the graphs from the study. I actually am quite intrigued by the same modeling of the curve as placebo. That was one of my original points and observations. I could point you guys to some interesting work regarding file drawer effect when it comes to medical studies/data and I do think xiaflex could be a candidate:

Link to commercial site deleted by moderator - James
You are watched, I have increased the alert level!!!
Example from the link:...Mom Makes $9,000/Month.......

having said that, I look forward to following real world results on this rx.

[ozonedoctor]

here is the other graph

[Lucketts]

So what do you think it means?  That the modeling is of equal weight to the injections?

[Head Up]

Here I am 8 days later beyond round 2 and the swelling/bruising that I previously described is 90% gone. The swelling has been completely gone for a few days. The bruising is still present in spots but amazingly better now vs one week ago. I expect the bruising to be completely gone by the 2 week mark. As far as sticking with the last two rounds, that is up in the air but right I'm leaning towards getting it done. Insurance is picking up pretty much everything. It's kind of hard to turn down a free ride.

The bruising from round 2 was much worse than round 1 but they are healing at pretty much the same rate. It's weird how some shots can produce virtually no side effects while others can be debilitating.

If I do go forward with more shots, I will see if I can somehow bypass the early shots to induce and reduce the erection for measurements. Maybe take detailed pics of my erection a few days before from multiple angles so the curvature angles can correctly be deduced. Hopefully that will suffice.