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Author Topic: Xiaflex cycle approved  (Read 2762 times)

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Kwebster

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Xiaflex cycle approved
« on: November 27, 2018, 12:10:14 PM »

Hi all.

This forum has helped me out, so I thought I would share my experience.

First experienced signs of peyronie’s in April of this year. (2018) I have had dupuytren’s and lederhosen for years, but not to the point that I even needed treatment.  This started at 18 and peyronie’s onset at 56.  Although I was once prescribed topical verapamil for the lederhosen, I didn’t stay with the treatment as I don’t even notice the problem that much.  I also don't think it was effective.

This peyronie’s, is a different kind of problem.  I have an hourglass with a hinge effect toward the base.  About 35 or more degrees if I apply any type of leverage pressure.  I also have a plaque toward the tip which bends right.  Some pain and discomfort associated with the tip plaque.

Started with my family physician and was referred to a urologist.  I asked the family Dr. to prescribe a topical verapamil from a local compounder to start some type of treatment.  I knew about this from the lederhosen.  At least I felt like I was doing something.

I’m in a rural area, with only one urologist who had a waiting period of 6 moths.  I saw an older traveling Dr. who had no experience with injections and only explained the surgical option.  Not much help.

At that point, I had already looked at the Xiaflex web site and found an experienced provider 5 hours away.  I decided to get an appointment and was able see him about a week later.

He suggested we start with verapamil injections.  He said they were cheaper and he had seen about the same success as with the Xiaflex

I did a series of 4 or 5.  I would travel on Thursday and get one that afternoon.  Then I’d go back Friday morning for the second plaque.  Low blood pressure with this procedure is a concern, so I had to do them a day apart.  This let me travel on Thursday and return on Friday and get each plaque treated with one trip.

The results were not great.  While I have a feeling, I would be worse without the treatment, that’s just a feeling. 

Since we weren’t getting great results, he asked if I wanted to try the Xiaflex, which I did.  I have BCBS and the office submitted the required prior approval.  Yesterday, I received authorization for 8 treatments.  I’m planning to get started soon and will update with results.

I also ordered and have been using a traction device from X4 labs.  It was only $100 and I’m happy with it.  You can wear it under your clothing and can’t tell it’s on.  I wasn’t sure how the thing worked and was wondering how you could have this device on that long.  Once it’s on, it pivots down and stretches you out.  It can be a little uncomfortable at times, but 90 % of the time I’m not even aware I have it on.

What I would tell anyone who is keeping this to yourself is to make the call and go to the doctor.  Sure, it’s a little embarrassing but I think it just because it’s your penis.  That first call is the hardest!  Once you’re in the system and with the urologist it’s not that bad.

Also, at least for the verapamil injections, he started with a numbing injection.  It’s not that bad really.  A little discomfort but very bearable.  Some bruising and swelling, but it’s a little inconsistent as to how much.  Injections toward the head of the penis seem to be more susceptible to bruising and swelling.  I know I was freaking out about this, but it’s not that bad. 

Also, make sure your urologist knows what he or she is doing.  I think it's worth the travel to have someone you trust and respect. 

Kwebster
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56
Onset 4/18.
Tried verapamil topical and injections with no success.  Now on Xiaflex.

Bubba dawg

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Re: Xiaflex cycle approved
« Reply #1 on: November 27, 2018, 03:37:55 PM »

Who is covering the medicine? I dont think bcbs covers the medicine. Least with my policy they didnt. 1500 a shot. They did cover the injection cost
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5 Rounds of Xiaflex. Good results.

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Kwebster

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Re: Xiaflex cycle approved
« Reply #2 on: November 27, 2018, 06:07:06 PM »

They are coving the medicine.  In fact, the Dr. office told me this morning that they had to re-apply to cover the office visit too.  There is also a copay program that covers most peoples gap.  They had me apply for that and she said many people don't have any copay once thats applied. 
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56
Onset 4/18.
Tried verapamil topical and injections with no success.  Now on Xiaflex.

Bubba dawg

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Re: Xiaflex cycle approved
« Reply #3 on: November 27, 2018, 08:43:22 PM »

I had to apply for grant money to cover the medicine. You must have a better policy than I do
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5 Rounds of Xiaflex. Good results.

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Kwebster

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Re: Xiaflex cycle approved
« Reply #4 on: December 20, 2018, 08:08:42 PM »

So had some trouble with insurance for a while.  They covered the medication but not the procedure.  All resolved and received the first injection today.  This injection was a piece of cake compared to the verapamil.   Even with no numbing as in the verapamil.  He said that the size of the needle is so small and the volume is so little that it's not even as bad as the numbing injection.  I would have to agree so far.  It's been a couple hours and just some slight bruising so far.  Have the next round scheduled for the 26th.  Will update if things change. 
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56
Onset 4/18.
Tried verapamil topical and injections with no success.  Now on Xiaflex.

Bubba dawg

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Re: Xiaflex cycle approved
« Reply #5 on: December 21, 2018, 06:50:40 AM »

Some of my injection weren't too bad. Others stung like a hornet. Depends on how hard the plaque and or calcium is
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5 Rounds of Xiaflex. Good results.

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Kwebster

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Re: Xiaflex cycle approved
« Reply #6 on: December 21, 2018, 08:59:24 PM »

So it's been a day and still a little sore.  The plaque site soreness is about the same as the verapamil injections.  Bruising about the same as well.  The new symptom is soreness in the pubic area?  Just above the penis.  A little swollen as well?
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56
Onset 4/18.
Tried verapamil topical and injections with no success.  Now on Xiaflex.

Bubba dawg

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Re: Xiaflex cycle approved
« Reply #7 on: December 22, 2018, 03:41:07 AM »

I had swelling in the pelvic area. I remember mentioning it to the doctor. He didnt seem concerned
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5 Rounds of Xiaflex. Good results.

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tonyode

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Re: Xiaflex cycle approved
« Reply #8 on: December 22, 2018, 09:13:43 PM »

I also had, have some pain in bruising in pubic area just above penis as well. Assume that is probably normal.
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Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

Kwebster

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Re: Xiaflex cycle approved
« Reply #9 on: December 22, 2018, 11:25:56 PM »

Thanks for the feedback.  I have to travel about 4.5 hours so I scheduled the second shot for next Wednesday.  I'm not sure I would be up to the second one yet, even now going on 3 days.  Glad I waited.  This was also based on some others experiences on this site as well. 
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56
Onset 4/18.
Tried verapamil topical and injections with no success.  Now on Xiaflex.

tonyode

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Re: Xiaflex cycle approved
« Reply #10 on: December 23, 2018, 07:23:18 PM »

My doc said said studies show that waiting a week for 2nd shot of a round basically is same as doing it 1-3 days. He said it works better because there is less swelling. Some people swell up quite a bit and he said it can be difficult to find plaque for needle placement as well as patients being less sore as well. There is a YouTube doc that talks of this as well. My 1st shot I was very sore a few days after. I could barely touch plaque area without severe pain. I honestly couldn't imagine doing it that soon.
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Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

Bubba dawg

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Re: Xiaflex cycle approved
« Reply #11 on: December 24, 2018, 01:05:32 AM »

Hope you continue to keep us updated on your progress tony
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5 Rounds of Xiaflex. Good results.

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Kwebster

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Re: Xiaflex cycle approved
« Reply #12 on: December 26, 2018, 09:51:52 PM »

Had my second injection this morning, last one was last Thursday.  Asked him about the bruising and pain in the pubic area, and he wondered if some of the medicine had leaked from the plaque area and migrated?  Not sure what I think about that.  He said that with the verapamil he would do 8 cc's and with the xiaflex only 2 cc's.  So when he injected the verapamil he would stick the needle in the plaque in several locations.  Thats why the numbing shot first.  When he did the xiaflex the first time it was one insertion with a slow removal as the medicine was dispensed.  As with the last time, the procedure wasn't bad at all.  However, this time he did about four different insertions in the plaque.  Again, no swelling or discomfort until about 7 hours later.  Now quite a bit of swelling.  Using a cold pack hoping it will keep it at bay.  This is some strong stuff, and hopefully it will have some effect.  Still not sure how I could have done the 1-3 day return for the second treatment.  Even after a week it's a little sore from the first shot.
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56
Onset 4/18.
Tried verapamil topical and injections with no success.  Now on Xiaflex.

Bubba dawg

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Re: Xiaflex cycle approved
« Reply #13 on: December 27, 2018, 04:45:08 AM »

I would not worry about swelling or pain in the penis after injections. Normal part of xiaflex treatment. I didnt wrap mine or put ice on it. The medicine is at work. Leave it alone until it is time to do the exercises.
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5 Rounds of Xiaflex. Good results.

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tonyode

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Re: Xiaflex cycle approved
« Reply #14 on: December 27, 2018, 03:26:37 PM »

Kweb...I too did quite a bit of cold packs after each injection for the first 24-48hrs. My doc also wrapped my penis up quite a bit n said to leave on for at least 24hrs. I kept wrap on for at least 36hrs. He said that would help reduce swelling n bruising. Which..with both my shots of round one, I had very little swelling. I had some bruising with first shot. But hardly any bruising or swelling with second shot.
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Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

Kwebster

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Re: Xiaflex cycle approved
« Reply #15 on: December 30, 2018, 12:56:13 PM »

So 3 days since second round and the pain an swelling are done.  Bruising is getting better.  Ive been wearing the stretcher for about an hour or so a day.  Haven't been getting nighttime erections to be able to model opposite of the bend.  Gave myself a couple softer ones just to try the technique.  Not sure why it makes a difference if they are voluntary erections or not?  The plaque doesn't seem any softer or more pliable?  I'm guessing it's at work for 6 weeks? 
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56
Onset 4/18.
Tried verapamil topical and injections with no success.  Now on Xiaflex.

tonyode

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Re: Xiaflex cycle approved
« Reply #16 on: December 31, 2018, 10:47:07 AM »

Good questions Kweb. I am assuming the docs don't want us to manually get ourselves erect for fear of injuring ourselves during a time of healing after the injections. I had a couple days of erections come n go and was a bit sore from them. But after 24hrs the soreness subsided. Although I wonder if erections are actually good though. Some say the blood flow helps in healing and theoretically, isn't the erection about the same as the manual stretching?  Who knows. Not sure how long the xiaflex continues to work after injections. It is made to break down the plaque. Mine does seem smaller and rigid to feel compared to being pretty smooth feeling prior to injections. Hoping what I feel is accurate and it is working. Only time will tell.
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Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

TDix

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Re: Xiaflex cycle approved
« Reply #17 on: December 31, 2018, 02:07:19 PM »

I will say that I feel an erection soon after injection creates a lot of pressure in the area.  In my case it caused a vein to burst.  Wasn't on purpose as it was a nocturnal erection, but I think doctor's don't want you "creating" unwanted pressure down there so soon after the injection.  Just my 2 cents
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47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Kwebster

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Re: Xiaflex cycle approved
« Reply #18 on: February 02, 2019, 10:52:02 AM »

So after six weeks I went back for the second cycle yesterday.  Sad to say I don't think the first round resulted in any improvement.  I talked to the Doctor who was disappointed and seemed a little surprised.  (he has done a lot of these)  I discussed others results on this board about how some times it seemed to work and others didn't.  We decided it was worth continuing to see if things would improve.  This was especially true after confirming that my insurance paid for all but $135 from the first two injections.  So I did the second shot and put a cold pack on for the trip home.  Kept it on for about 10 hours.  No swelling or bruising at all?  Makes me wonder if the medicine was even a good batch?  I know it's frozen and they thaw it out just prior to the injection.  Or did the cold pack work that well?  Did the cold effect the medication?  Almost wish there was swelling and a little pain to tell me it's working?
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56
Onset 4/18.
Tried verapamil topical and injections with no success.  Now on Xiaflex.

Bubba dawg

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Re: Xiaflex cycle approved
« Reply #19 on: February 02, 2019, 11:26:30 AM »

My Doctor has a lot of experience injecting Xiaflex. He said not to expect much improvement until round 3. So yours and my experience would prove him right. The bruising and swelling mainly from the doctor molding right after the injections. My Doctor was really rough on my dick!! That hurt as much as the injection sometimes. He was working the medicine in. Told me not to do it that hard Still it was round 3 before I got some real improvement
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5 Rounds of Xiaflex. Good results.

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tonyode

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Re: Xiaflex cycle approved
« Reply #20 on: February 02, 2019, 11:42:46 AM »

Kweb....u sound similar to me. 1st shot produced the typical bruising and swelling along with pain for a few days. 2nd shot was a breeze...no bruising and very little pain. Zero swelling. Had my 3rd shot this past Thursday and it was the most painful of the three. Have quite a bit of bruising and some swelling. Pain is definitely there as well. I also iced quite a bit for 2 days. Which definitely helped with the pain. But I was thinking if that was a good idea or not. I was reading where xiaflex is used for dupuytrens (in hands) and it said not to use ice/cold because it affects efficacy of the drug. Now has me wondering. I did ask my doc after the first injection of it was ok to ice and he said go ahead. So who knows. As far as pain, swelling and bruising, I guess its just the luck of how much damage internally the needle does each time.
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Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

Bubba dawg

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Re: Xiaflex cycle approved
« Reply #21 on: February 02, 2019, 11:52:06 AM »

I couldn't tell for sure if it was the needle/medicine because the doctor really worked on it after the injection. Your doctors are not severely doing the modeling after the injections? If not they should be. I would ask them why not.
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5 Rounds of Xiaflex. Good results.

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tonyode

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Re: Xiaflex cycle approved
« Reply #22 on: February 02, 2019, 11:58:37 AM »

My doc does not do the modeling. Nor are they supposed to right after injection. He wraps my penis up pretty tight and says to keep it wrapped for at least 24hr. He said it reduces the swelling and bruising. He instructed me to do the modeling after the wrap comes off. The modeling is not brain science. The xiaflex brochure actually has diagrams that show how to do it. But pretty much common sense stretching. Not sure why a doc would need to do this except for another appointment to charge patients and to show patients how it is done. If it were so important for the doc to do it, then we would be going back daily for months.
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Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

Bubba dawg

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Re: Xiaflex cycle approved
« Reply #23 on: February 02, 2019, 12:44:33 PM »

I am talking right after the injection the doctor worked the medicine in by bending and stretching harshly. That used to be on the xiaflex website about doctor modeling. I didnt have to make another trip in to see him. Inject then model. He is the top xiaflex injector in my state. He did this each time right after he injected it. He is breaking up more plaque so it will take the medicine. Worked for me! Even though it was painful
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5 Rounds of Xiaflex. Good results.

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Re: Xiaflex cycle approved
« Reply #24 on: February 02, 2019, 01:00:34 PM »

Anybody should be open to new techniques. This one he found worked for his patients. He didnt wrap mine. Just injected. Modeled . Made sure I was going to do my modeling. Not as rough as he did of course.
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5 Rounds of Xiaflex. Good results.

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Kwebster

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Re: Xiaflex cycle approved
« Reply #25 on: February 02, 2019, 06:46:31 PM »

As for the cold pack and the efficacy of the medication, I was wondering the same thing.  I did think though that since it's frozen just prior to the injection, the cold must not effect the potency of the drug itself?  Idk?  As for modeling I too have been cautious to do that between the first and second injection of the cycle and then started only three days after the second one.  Doctor didn't model and told me to follow the instructions in the handout and on the website.  Said he didn't want to charge me for an office visit for something I could figure out myself.  I'm still a little afraid of getting too aggressive?  Was also wondering if the medicine would escape from the plaque if it was done too quickly.  Back out through the needle site. 
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56
Onset 4/18.
Tried verapamil topical and injections with no success.  Now on Xiaflex.

Bubba dawg

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Re: Xiaflex cycle approved
« Reply #26 on: February 03, 2019, 03:06:09 AM »

This was all done in one visit. He wasnt teaching me how to model. He wrenched down on my dick after the modeling for at least 5 minutes. Severely bending and  stretching it. I guessing he was working the medicine in all over the plaque? Of that didnt hurt my penis then our modeling wont. I did get a hematoma one time when he did it particularly hard. I still think it made the treatment more effective. Will be interesting to see if yall have good results without this extra doctor modeling
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5 Rounds of Xiaflex. Good results.

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Re: Xiaflex cycle approved
« Reply #27 on: February 03, 2019, 12:04:44 PM »

Bubba..not sure if what one doc does compared to another means one is better than the other. If u go to one oncologist compared to another, their treatment methods could be completely different. Doesn't mean one would work better than the other. My doc did work in the med manaulally after each injection. But didn't wrench on it like ur doc did. I would assume ur hematoma was caused by that. I'd prefer to not deal with a hemotoma personally. The plaque is very dense and even more so if any calcification sets in. Multiple shots are done in an attempt to get the med into as many areas of the plaque to break it down, soften it so we can model it, break it up. Again, not saying ur doc is wrong, right, or whatever. Just that they all have their methods, probably based on their training and research. Not sure how much improvement I have at this point, but there seemed to be at least some after my first round. I am anxious to see how it is after my second round, the halfway point of the 8 shots. I'd like to get to the point where I feel comfortable enough to say stop and not have to do all 8 injections. Keeping fingers crossed!
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Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.

Bubba dawg

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Re: Xiaflex cycle approved
« Reply #28 on: February 03, 2019, 12:52:42 PM »

Saying which technique is better. I would like to see if there is a difference in the outcomes . I had sex today and last Sunday. My wife could not tell I had peyrones these past 2 times. She is sick so she only feels like doing it one time per week. She did not notice a curve anymore in the missionary position.  I couldnt see a bend either.. I seem to have delayed improvement . I am taking supplements
I thought what the doc did was the norm. I hope you guys achieve the same or better results from your treatments. This doctor bent and pulled so hard it through my back out of whack from bracing lol
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5 Rounds of Xiaflex. Good results.

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Re: Xiaflex cycle approved
« Reply #29 on: February 03, 2019, 12:56:28 PM »

Yes thought the hematoma set me back some.  He went too far that time imo
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5 Rounds of Xiaflex. Good results.

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Re: Xiaflex cycle approved
« Reply #30 on: February 04, 2019, 06:50:24 PM »

Bubba..sounds pretty awesome where u are at currently! That is great news! I can still have sexy as my curve to the left was at 55 degrees. But with my bend and indentation, it did cause some instability. Which is a concern as I don't want to reinjure and deal with another attack. So I have taken it easy with the sex. Glad u are feeling and looking good! Helps with my and others outlook in an optimist way.
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Kwebster

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Re: Xiaflex cycle approved
« Reply #31 on: March 08, 2019, 06:45:12 PM »

So not sure where I left off here.  Had the second shot of round 3 February 8th and again did the cold pack on the way home.  No swelling or adverse reactions at all.  The Dr thinks the plaque is getting better.  I'm not so sure, but I don't think it's getting worse.  Got my bill and it was almost $18K!.  Insurance paid everything but just under $1700.  But, there is a program that will subsidize up to $1000 a shot so should be no out of pocket.  Made appointments for round 4 when I was talking to the office about the bill.  May as well continue as long as it's not costing me anything.  If I had to pay out of pocket I would probably not?  I'm still wondering about the effects of icing after the injection?  The Dr said it should have no effect but its almost more satisfying when there is pain and swelling.  Makes it seem like the medicine is more potent? 
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56
Onset 4/18.
Tried verapamil topical and injections with no success.  Now on Xiaflex.

TonySa

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Re: Xiaflex cycle approved
« Reply #32 on: March 08, 2019, 09:07:45 PM »

Kwebster, sounds like it’s going smoothly.  Be sure to add traction to maximize the benefits.
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

tonyode

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Re: Xiaflex cycle approved
« Reply #33 on: March 10, 2019, 07:32:53 PM »

Kweb....asked my doc about icing after shots. At first he thought it was ok. But after he thought about it, he told me not to. He said the xiaflex is delivered in ice, they basically thaw it to administer it. So he thought it better not to ice for at least a few days after shot.
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Early 50s, 7 months diagnosed. 55 degree curve, indentation at base to the left.
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