Completed Xiaflex Treatment - Results, Takeaways, What I Wish I'd Done Sooner...

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lmn25

Hey guys,

I haven't been to the board since I completed my Xiaflex treatment, and wanted to update you on my results, and offer my takeaways...

RESULT: After 4 cycles of Xiaflex, on various plaques, I've gone from an approx 45 degree upward curve to somewhere between 25-30 degree curve, depending on the erection quality. My curvature is more gradual now and less of a bend, which makes intercourse easier. Here are my takeaways:

-I'm glad I did it. I had no major complications with my injections and it improved my curvature enough that intercourse is possible.

-I did develop a weird side effect from the medication which caused me to have to stop treatment -- I started developing fever after the shots (this happened after multiple cycles, not just once), as well as intense lower back pain that would subside about 30 minutes after the shot. I'm discouraged that I developed these side effects as it will mean that surgery is most likely the only option for me if my Peyronie's begins to worsen again.

-I had to change doctors because of several reasons and I cannot stress enough the importance of finding a good doctor who has experience and that you trust. If you're not happy with your doctor, look for another until you find the right one, as tiring as that can be. If you're in the Los Angeles area I highly recommend Dr. Jesse Mills at UCLA.

-The best stretch *for me* after each Xiaflex treatment was to induce an erection naturally (looking at visual stimuli) and then to GENTLY straighten and hold for 30 seconds at a time, letting up if it became too painful. My doctor said he felt this was more beneficial than the flaccid stretching, and I agree. You must be very, very careful doing this as you could risk fracture if you apply too much pressure. I would absolutely recommend consulting with your doctor to see if they recommend that particular stretch for you before trying it.

-The first round of Xiaflex was the most beneficial round -- I believe it reduced my curve by at least 12 degrees and that was the bulk of my improvement.

-Low dose cialis at night and l-citrulline in the morning were the only oral supplements that seemed to help me. This combination of oral treatments helped decrease my Peyronie's pain noticeably. Pentox did not seem to help me, unfortunately. I wish I'd started the cialis sooner.

-Traction was hit or miss for me (I used Restorex), and it may or may not have caused me to develop more plaques -- I really don't know if helped or hurt me. Xiaflex and manual stretching seemed to help me the most.

-Checking in with this board at the beginning and then periodically was very helpful, but coming here too often was bad for me mentally. Trying to get out and live my life as normally as possible was, and continues to be, the best thing for me mentally.

-Adjusting my expectations for my sex life has been helpful: I put way too much pressure on the importance of being able to have intercourse. Oral sex is easier for me, and I had to learn that intimacy with my partner can be about more than intercourse, even though I'm glad it's still possible for me.

I hope this helps someone out there. I hope my condition has stabilized now, but if it worsens, I'm sure I'll be back. I'll try to check in periodically if anyone has questions, too. Good luck to all of you!

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Bubba dawg

Congratulations on your success . I got lower back pain too but that was from arching my back during the injection and doctor harsh modeling. No fever for me. Just a calming effvt
5 Rounds of Xiaflex. Good results.

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bentbigd

Interesting on the back pain.  I had my 5th round this week and as soon as I got in my car, I had intense lower back pain that made me pull over my car.  I had never had that happen with the first four rounds.  I assumed it was from me clinching up too hard when I was getting the injection- it also lasted about 30 mins.  Anyone else have this "side effect"?
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Alibaba

Fever is an allergic side effect.  I had a similar issue after chemo 3 weeks ago and jumped up to 101.9°.   If the back pain continues, you might try a different med than Cialis.  Levitra gave me back pain. I liked it best but the back pain was why I dropped it. People react differently so 1 med does not always fit everyone. Glad you have made progress and congratulations on finding a doctor that fits for you. I am a strong advocate of firing a doctor and finding another when needed. When you find a best in class doctor, hang on to them. Cheers.
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nc7209

Hey thanks for this post - I'm going to try Dr. Mills based on your recommendation - I haven't had any luck and I think changing doctors might help.  I'm in the LA area as well...