Question for guys currently getting Xiaflex injections

[Mending the Bend]

Hello gentlemen,

I'd like to get an idea of what everyone is experiencing with respect to the scheduling of their injections. I have read some posts in which men claimed to be receiving two injections only a few days apart. That isn't the protocol I've been experiencing. My schedule is as follows:

Curvature assessment and Injection 1
(2 weeks)
Injection 2
(6 weeks)
Injection 3
(2 weeks)
Injection 4
(6 weeks)
Curvature assessment and determination to repeat the above or not.

Also, I am bandaged after each injection - supposedly to keep down the swelling and bruising. I remove it after three days. During the breaks, I am supposed to be doing traction/modeling, avoiding sex (except for last 2 weeks of the 6 week breaks), and allowing the enzyme to slowly dissolve the plaque.

I'd love to hear from others about their scheduling protocols and break procedures.

Thanks in advance.

 

[michaelb]

Mine was Friday, Monday, Tuesday.  No bandage after any injection.  In terms of results, it absolutely did work.  The bend is basically gone.  The only thing that remains is the heavy denting.  Mine was 50% of the way up so from the middle to the head is still dented on the right side, but it is straight.  Unfortunately for me 2 new plaques formed elsewhere, so I'm heading in next week for another round on those.  

[Mending the Bend]

michaelb,

Thanks for your input. I didn't realize that there was so much variation in the way Drs are administering the drug.  The prescribing information sheet for Xiaflex specifies giving two shots a few days apart, followed by about six weeks before the next series of shots. My doctor seems to be drawing out the time; yours seems to be shortening it.

Did you experience much swelling without the bandages? And what about modeling or stretching - is your doctor performing any of it, or does he advise at-home therapy?

Thanks again.

Mending the Bend

[Cantstopme]

Mine was an 8 day process...induced erection and marking on Wednesday, first Xiaflex injections Thursday, second injections the following Monday, modeling on Wednesday (just finished this past Wednesday). No bandaging after and wait six weeks for the next go round.

I had some minor swelling and quite a bit of bruising but otherwise OK. I was instructed to to perform stretching 3 times a day and, if I get an erection, gently bend it in the opposite direction of the bend no more than once a day.

I know you didn't ask but, my bend is close to the base, straight up, about 60 degrees or more. Plaque is thick and large (think two quarters stacked together and wrapped in an upside down U around the base).

Good luck to you.  

[Knight]

This is concerning, I too have been wondering why different doctors are prescribing different protocol for the Xiaflex injections. I am on the fence between taking the shots or just jumping right in for surgery, but if I do elect for the shots my doctor said he would inject me with Xiaflex on back to back days, 4 different times, 8 weeks apart. He also said he wanted me to do traction while getting the shots which I haven't heard anyone else doing. It's concerning to have so many different opinions on the best way to do it. I have a year to decide if I want to proceed with the injections before I have to be re-approved by my insurance company so I was thinking of riding it out for awhile (if I can stand the discomfort) to see how things evolve and figure out what works best.

My other alternative is to skip the shots and proceed to the grafting table. Surgery is cheaper than the shots which just blows me away. Most of the feedback I have seen on this forum has been mostly very positive regarding the Xiaflex injections where as my doctor said about 1 out of 3 have great results, 1 out of 3 have so so results and 1 out of 3 have no results. Surgery presents certain risks that the shots don't but it's fairly certain that they will get that evil plaque out if my body where as the shots can be hit and miss.

It's a tough call.....

[RoyHobbs]

I'm currently paying out of pocket for the xiaflex but have been told I will be reimbursed by my insurance company. I wrote about this in an insurance related thread.

I start my first round a week from Friday. 2nd shot on following Monday. Modeling the following Tues. Dr. Gelbard of Burbank is my doctor and I was referred to him by Lue because I live closer to him. Gelbard has been working with the drug since the 80's and had more patients in the trial than anyone else. I believe the duration between cycles for Gelbard is 6 weeks.

My feeling is that I want to try the shots before I opt for the knife. Costs be damned (but fingers crossed the cost will be reimbursed almost fully).

[Mending the Bend]

Knight -

Regarding the injection protocol, what appears consistent among doctors is that there are 4 courses of 2 injections each, separated by about 6 weeks. What's inconsistent is the time between the 2 injections - some do it a day or two apart, my doctor does it 2 weeks apart. The Xiaflex web site itself calls for 2-3 days between the 2 injections. I think my doctor is just being conservative. But I don't think the timing makes that much of a difference, really. Frankly, I think that spreading the injections out over a longer period of time may be a good thing, as it gives time for other modalities to contribute to the cure, like traction (which my doctor prescribes and I am doing), modeling, VED, supplements, etc.

I think the injection technique and the accuracy of location within the plaque are more relevant to a positive outcome than is timing. With two injections so far, I've experienced very significant curve reduction (39 to 22 degrees), and side effects have been a non-issue. My results may not be typical, but I did read that even calcified plaques are responsive to Xiaflex injections (although they were excluded from the clinical trials). I think the quality of the doctor has a lot to do with how well these procedures go.

Good luck on your decision. Please let me know if I can help with any other questions.

[james1947]

Yes Mending-the-Bend!
Personally I am sure that:

I think the quality of the doctor has a lot to do with how well these procedures go.

And I said that long time ago.

James

[UrsusMinor]

Hi, Knight--You're a more courageous fellow than I. I'd go with the shots first and then surgery only as a last option. But, whatever choice you make, I wish you the best.  

[RoyHobbs]

I have a question about pre-injection protocol. Did anyone get instructed by their doctors to stop taking medications and supplements prior to injection? I have my first shot next Friday and have been told to stop taking Cialis and Pentox five days before. It makes sense to me. Also wondering about co q10? Or other supplements?

[UrsusMinor]

There is some debate about CoQ10. It has been reported in a few cases as interfering with Warfarin, so some people worry that it's a slight coagulant, but other folks think its a slight thinner.

Things reputed to thin blood include Curcumin, Vitamin E, Garlic extract, fish oil/omega-3, nattokinase, bromelain, some of the B vitamins...Aspirin, of course. Personally, I think you'd do well to stop most supplements.

I'm not sure why the doc is forbidding Cialis. Maybe he wants to avoid erections immediately folllowing? Maybe he's like less blood supply in the region during the shots? It would be interesting to know the story.

[Mending the Bend]

I was told to avoid aspirin for about a week after the injection, which makes sense if you get some bruising or bleeding from the collagenase. If I were on Pentox, I'd certainly stop that, too. But I am taking CoQ10, Acetyl L-Carnitine and Arginine/Citrulline supplements during my course of injections. I haven't yet mentioned this to my doctor because I don't want him to tell me to stop.

I'm not sure why the doc is forbidding Cialis. Maybe he wants to avoid erections immediately folllowing?

That's right, Ursus. The risk of penile fracture is greatest during the first week or two after injection. I was told no sex, no masturbation. Any spontaneous erections (preferably not rock-hard) are used for gentle penile modeling against the direction of the curvature. ED drugs with the advertising disclaimer that "if you have an erection lasting more than 4 hours, call your doctor" are probably not a good idea at this time  

[UrsusMinor]

Aha, that explains it!

As to the erections > 4 hours, here's an animated Austin Lounge Lizards song, "The Drugs I Need." At the very end, in the fast-talking side-effects disclaimer, they say, "For erections lasting more than four hours, insert your own joke here."

http://www.youtube.com/watch?v=eZPZG92iYE4

One of my favorite songs, by one of my favorite bands.

[RoyHobbs]

Actually the stopping of Cialis I was told is related to the ultrasound. I guess it messes with a clear view. I had never heard that before. But also makes sense to lay off anything that may give rock hard erections possibly leading to penile fracture.

[Cantstopme]

I received a two page "Xiaflex Patient Guide" from my doctor which he said he got from the Xiaflex rep. It describes the risk of penile fracture and goes into detail on stretching and straightening. Did others receive this, as well? I would post it here but cant seem to get the "Insert Image" function to work and there is no attachment option under "Attachments and other options".

[james1947]

Cantstopme

You will be able to post pictures after 5 posts

James

[Cantstopme]

Thanks, James.

Im also taking  CoQ10, Acetyl L-Carnitine and Arginine/Citrulline and Pentoxifylline as well as Fish oil, but not Cialis. I specifically asked my Dr. about avoiding these substances before and after the injection and he said to keep with the program.

Its obvious from reading through the posts that there is still a lot of subjective information regarding treatment options even with Xiaflex. There is no one size fits all approach here.  

[Cantstopme]

Here is the "Xiaflex Patient Guide" I mentioned earlier.

[Knight]

Hi, Knight--You're a more courageous fellow than I. I'd go with the shots first and then surgery only as a last option. But, whatever choice you make, I wish you the best.

2 months later and I'm still paralyzed by fear of the unknown and unable to make a decision. My doctor finally stepped up today after the 3rd time I asked him and said if he were in my shoes he'd try the shots first because in his words the shots won't "burn any bridges" to other treatment options if they are not successful. That seems wise enough to make me seriously consider the shots at this point.

Traveling 100 miles one way for the treatment 3 times a week,  a total of 4 times  every 6 weeks, is a problem but I suppose it may be doable. Some guys say there is so much pain involved that they couldn't even drive. Is this really true and accurate? My plan would be get the shots in the morning, drive 100 miles and go to work (an office job). Is that realistic or is the pain too severe?

What about working out? Can a guy still stand physical exertion while under going Xiaflex treatment?

And then there's the traction question. My doctor wants me doing traction for 1 hour every day while going through the treatment but I don't see this as the standard protocol for everyone. I know many guys are doing this anyway but I just can't fathom how I can give up an hour everyday for traction unless it can be done while sleeping? If that question is completely insane I apologize, I just can't visualize the traction process in a life that is already over booked and unmanageable. I can totally see massage and gentle stretching but that isn't quite the same as traction.

So I'm trying to sort it all out and figure out how this can work for me. Surgery was somewhat an all or nothing proposition, but it was faster and simpler in some ways in comparison to Xiaflex. Believe me, after almost a decade of dealing with this I understand there is no quick, easy fix. I just don't want to go through 6 months of perceived Xiaflex misery only to end up on the table under the knife anyway.

I'll keep following you courageous fellows that are already going through with it to learn all I can learn, but I need to do something soon because it sure isn't getting any better just by taking Cialis and Pentox. My insurance will cover the majority of the cost involved so that is very positive. All advice is welcome and appreciated. You guys are awesome!

[Mending the Bend]

Knight -

I am a little confused by your statement about treatment "3 times a week", 4 times every six weeks. The protocol calls for 2 shots every 6 weeks (and some, but not all docs, are doing in-office modeling), so 2 (or 3) round trips. My personal opinion is that the in-office modeling probably isn't necessary. You can do it yourself at home in a matter of minutes.

With regard to your question about pain - that is hard to say. Your reaction may be different, but of the 4 shots I've received so far, I'd say that only after one of them (the most recent shot) did I feel in any way inhibited by the pain and tenderness. But I could have still driven, worked and taken care of whatever tasks needed completion. I probably wouldn't have chosen to work out too vigorously for a day or two after that shot, but otherwise it shouldn't be a problem. The other three shots were barely noticeable in how they affected me. Very minor tenderness, no big deal.

About traction, I am also doing it for about an hour a day (not every day, however). I usually attach the device at the end of my day and use the time to relax on the sofa an maybe watch a film or catch up on a tv show. Moving around too much with the traction device on can be a little uncomfortable, which is why I wait until later at night.

It is probably good that you are expecting "6 months of perceived Xiaflex misery". Frankly, I was expecting the same thing before I started - after having seen some scary pictures and hearing mixed reports of positive results. My experience has been far less dramatic on side effects and far more dramatic in results. I hope the same for you.

I have four more shots to go, and I am hoping that the Xiaflex will continue to improve my condition enough so that I won't need surgery. I think your urologist gave you very good advice when he said that Xiaflex won't burn bridges. Count me as in agreement and my vote would be to get the shots.

Best of luck to you.

[Knight]

Thank you for sharing your experience and advice Mending. To clarify I was indeed counting the modeling visit as the 3rd trip and I was hoping that one could be self administered, at least after the first group of shots.

I have been following your progress in the other threads and it does sound like this treatment has been remarkably successful for you this far. I'm very happy for you and for the hope this gives myself and others.

So it sounds like my idea of doing traction at the end of the day while preparing for sleep is feasible. I don't even know what the devices look like but I should start looking into it. I have a VED, but I am one of the few who can't use it. I have given the VED a half a dozen careful attempts but each time it ends bad causing more pain and inflammation. I have a lump of hard, sharp, calcified plaque right at the base that the VED seems to ride on and severely irritate for some reason. But that's for another thread on another day.

Did you or do you ever have any pain with your bend? And if so has the reduction in plaque also resulted in a reduction of pain? My scarring seems to run almost the entire circumference of the base of my unit, it's almost as if at some point it was broken off right at the base. Of course I have no knowledge of that ever being the case and I never felt like anything had ever happened until this Peyronies showed up about a decade ago. My point in all this is that I have plaque on both sides, it is just more prominent on the left side. I have dents on both sides too, but this is also more prominent on the left side. I also have a bit of a hinge to the left with a 30 degree clockwise twist. There is considerable damage but even through all of this my wife and have managed to remain sexually active...probably more so than most healthy folks. But something tells me if the Xiaflex could reduce or eliminate that large, hard, sharp lump of calcified plaque I would be in much better sexual shape and in less pain than I am today.

And like you and the good doctor have already stated, I can always have the surgery if the outcome isn't successful.

I wonder if anyone has ever ended up in worse shape after Xiaflex? I think all but 1 person that I know of on this forum has had some form of success with the Xiaflex treatment which is better than the studies I've seen claim. So far it seems to be very good!

Good luck Mending! Thank you very much for your input!

[Mending the Bend]

Knight -

Regarding your question about pain: In the first few months after I noticed the bend, I had some erection pain on the side of the curve going upward towards the glans. It felt almost like a pulling sensation, as if the left side of my erection was being restricted in length - because it was! It was never very painful, more like discomfort. I'd give it a 3 on a 1-10 scale. Fortunately I haven't felt pain while flaccid, nor during erections for almost a year.

Yes I think you will definitely be able to skip the 100 mile round trip for modeling. My doctor never even mentioned modeling, and when I questioned him about it he emphasized traction instead. Nonetheless, I'm doing a little modeling on my own.

[UrsusMinor]

Knight brings up an interesting point: the success rate of Xiaflex, and lack of serious side effects, among contributors to this forum does indeed seem to be very different than in the trials.

I'm curious why that might be. Perhaps doctors are more experienced and therefore doing a better job? Or is our forum not a good cross-section of the population with Peyronies Disease? Or something else?

It's odd, and interesting.

[Mending the Bend]

My doctor raised the very same point during my last appointment. He and his nurse practitioner had asked me about bruising and swelling over the previous 3 injections, and I replied that they were minimal. They also noted my significant improvement from only 3 injections. They looked at each other, as if they had had similar reports from most of their current patients, and the doctor said that he thought the investigators in the clinical trials may have been doing (at least some) injections only sub-cutaneously, rather than directly into the plaques. This would account for the more significant swelling and lower rates of improvement in the trial. If you miss the plaque, then the collagenase could do more harm than good. This is a treatment in which the technique is as important as the drug.

[james1947]

Encouraging to see that the Xiaflex treatment results are much better (at list our forum member reports) than the trials results.
Also during the trials some doctors achieved much better result with the treatment than others.

James

[pointedly]

I had my first Xiaflex injection yesterday and will receive my 2nd on Monday.  I have some observations that I think are VERY IMPORTANT to note about this disease.

FOR STARTERS
1. If you have Peyronies Disease or think you might, get an ultrasound with imaging and blood flow calculations immediately!  I went through 3-4 years of treatment and got my first ultrasound yesterday.  I finally got to see what has been causing my curvature, but it's more important for the urologist to know where to pinpoint treatments/injections.
2.  Get baseline measurements when diagnosed!  I finally found out that I have a 65 degree curve:  This is after 3 rounds x 12 injections of Verapamil, traction and VED therapy.  I know I have had some improvement over the years, and my hourglass is barely perceptible, but I have no baseline to compare the benefits of the previous therapies.

XIAFLEX INJECTIONS
1.  If you have had Verapimil injections, Xiaflex (so far) is a walk in the park.  It's only one injection that lasts 2-4 seconds.  I had anticipated not being able to work yesterday afternoon, but felt so good that I ran my skidsteer and poured concrete this morning - pleasant surprise!  It has turned the color of a beautiful purple sunset, but it feels like it has had a mild sunburn.  By contrast, I took ibuprofen and sometimes, oxycontin after my Verapimil, along with a bag of ice.
2.  I was instructed to stretch out my penis 3 times a day for 30 seconds each time.  I was demonstrated on how to get a decent pull without pain.  The doc also said that gentle VED would be OK, but not to use the base constrictors that are used to trap blood and maintain erection.  I am trying that tonight.
3.  I slept very well last night, so I am unsure if I had erections during sleep.  I did wake up with morning wood, so I bent gently "against the grain" as instructed.

OTHER NOTABLES
1.  My bloodflow into my penis, as tested during the ultrasound, showed that I was at a measurement of 97, when a minimum of 25 is considered adequate.  My bloodflow out was -9.5, when anything less than 7 is adequate.  I am 54, so I attribute that to exercises/workouts that are challenging and the natural supplements that I take daily.  I take 6g of arginine (split into 3 doses) at 20 minute intervals an hour before I work out.  I also take 2g at night.  I take 1.5 liquid carnitine 1st thing in the morning and the same amount before bed.  I also take 100mg of Ubiquinol before bed.
2.  After reading others' posts on this forum, I feel very fortunate that my plaques are not calcified.  This may be sheer luck, but it may very well be the Pentox prescription, the supplements listed above, the VED therapy I do at home, or a combination of the above.  I can't control luck, but the other things I do are not harmful and may help...
3.  The most painful part of yesterday's tests and injections was the erection reducer after the ultrasound.  The nurse had to bend me as if straightening my erection while administering the injection.  I had the option of waiting it out for a couple of hours or having them make it go away by injection.  Since my skidsteer was calling my name and the days are getting shorter, I took the "quick fix".
4.  If you have baggy shorts and a long shirt, wear them for any procedure where an erection will be induced!!!  When I had to cross the hall from the procedure room to the urologists office, I was greatly relieved that no one else was in sight...

I will try to follow up after my 2nd injection on Monday.  I understand the protocol to be consecutive days of Xiaflex, but it is a 2 hour drive to the uro's office so I have no concern over the 2 day interruption.

Pointedly

[Knight]

Nice, detailed post! This is seeming to be more and more promising. I just need to make my first appointment and get with the program. Thanks for the uplifting information guys! Please keep it coming. Hopefully I'll be able to contribute sooner than later.

Knight