Collagenase clostridium histolyticum and Pain: What Users Say

• Unh...
• June 15, 2023

For Peyronie Disease "Do not undergo this treatment! I wish I had never heard of Xiaflex. My Peyronie's disease wasn’t great, but I’d give almost anything to go back to the way I was before Xiaflex. It destroyed my penis. Even my urologist was surprised when he witnessed how much length and girth I’d lost. Of course, neither he, the hospital, nor the manufacturer helped in any way. Plus, it’s super painful! Not worth it!"

• Fre...
• Taken for 6 months to 1 year
• November 10, 2022

For Peyronie Disease "I was on my LAST injection, and it sent me to the ER! The other 7 injections did NOTHING! I’m in so much pain and misery right now! I can barely walk! Swelling and discoloration are the worst right now, and every time I walk, it feels like my penis is in a blender or being twisted by a psychopath! How is this product so expensive and 'safe'?"

• Mar...
• Taken for 6 months to 1 year
• October 22, 2019

For Peyronie Disease "Have Peyronie's with a 90 degree bend. Did 3 cycles of Xiaflex, a total of 6 injections. Got a hematoma after the sixth injection. End of Xiaflex treatment. Still have a 92 degree bend up and now a 30 degree bend to the right. Total waste of time and money. Not to mention the pain of the injections and the hematoma. Insurance paid $30,000 for this treatment and total failure."

• JBa...
• January 30, 2021

For Dupuytren's contracture "After considering surgery, I decided instead to have a Xiaflex injection to treat Dupuytren's contracture of the pinky finger of my left (non-dominant) hand. At this time (approximately two months post-injection), I am extremely pleased with the result. I did not have to risk the complications and long healing time of surgery, and the contracture has almost completely disappeared, along with the cords that caused it. Yes, there was some pain and discomfort during the administration of the Xiaflex and again the next day, when a local anesthesia was injected prior to the finger manipulation. These were expected and well tolerated. I recovered full use of my hand within a few days after the procedure. It is important to find an experienced hand surgeon who has had a lot of success doing these injections."

• 1st...
• Taken for 1 to 6 months
• June 4, 2021

For Peyronie Disease "I have completed my 3rd series of Xiaflex, 6 shots... WASTE OF TIME!! Not to mention the pain and swelling. I now have more of a curve in my penis than when I started. Scheduled for a fourth series, but I will not be going. There has to be a better way. I just hope I haven't gone so far that I cannot fix it."

• Jim...
• Taken for 6 months to 1 year
• February 5, 2022

For Peyronie Disease "Guys, do not get your hopes up. This is a very expensive and extremely painful waste of time. I am left a shell of a man. My PD is as bad as ever. Ninety-degree curve and a year later painful. Xiaflex is pure garbage."

• M K...
• Taken for less than 1 month
• September 14, 2018

For Dupuytren's contracture "I thought I would try this less invasive alternative to hand surgery. I had a 45-degree bend in both hands affecting the pinkies. The injection was painful for a few seconds, and my hand was wrapped, so I could not move the finger. Two days later, my surgeon manipulated the finger. He injected me with a numbing agent, which again was painful for a few seconds. The manipulation was successful in both hands, but one had a skin tear that needed attention post-op. I performed PT afterward and wore a splint at night for three months. All was fine until the cord returned on both hands to the same degree as before. This occurred within one year. Therefore, I rate the result as a one. I subsequently had hand surgery to remove the affected tissue, and the results have been exceptional after four years. Based on my experience, I would not suggest the Xiaflex treatment alternative. The success rate is too low, and the cost and pain are too high. Find a good hand surgeon, undergo the PT, and be happy with the results."

• Wre...
• Taken for less than 1 month
• May 5, 2022

For Peyronie Disease "Had about a 35-to-45-degree curvature in the middle of the penis. Sex was possible, but sometimes painful. I should have left well enough alone. Only had one shot. Did everything they tell you to do. It straightened it out because my penis shrunk so much that the middle of it is basically gone, plus the girth is about two-thirds of what it was before. No mention of that by the doctor or in the literature. Don't know how this stuff is legal. Worst decision of my life."

• Dav...
• Taken for 1 to 6 months
• November 5, 2019

For Peyronie Disease "The bend moved to the top middle from being closer to the tip. The bend is somewhat lesser, but now the length and girth are a lot less also. Take your chances on that it will go away by itself. Not worth the cost, pain, and decrease in size. Now what can I do? Should be lawyers begging for my business with lawsuit. So annoyed!!!"

• Dud...
• Taken for less than 1 month
• January 10, 2019

For Dupuytren's contracture "Before 1-07-19, I thought the benchmark for pain was the night I had to undergo an emergency bladder catheterization for another issue. The Xiaflex injection that I just experienced completely erased that unpleasant memory with a brand new horrifying one. The next day, when my hand was injected with novocaine before the manipulation, was almost as bad as the Xiaflex. I briefly glanced at my hand when the procedure was complete and saw that my fingers were back to their normal position. My point is simple. As medicine advances, isn't the comfort of the patient supposed to be a main part of the equation? I had Needle Aponuerotomy on two previous occasions, and the discomfort was minor compared to this, not to mention less expensive to all concerned. My other hand is also due, and I would rather live under a freeway bridge than go through Xiaflex again. I'm definitely going back to N.A. even if I have to go out of network and pay out of my pocket."

• Tom...
• Taken for 6 months to 1 year
• January 28, 2022

For Peyronie Disease "After two rounds of Xiaflex, I can say I’ll never have a third. Never recommend to anyone, no matter how bad your PD is. The pain, swelling, blisters, and bleeding are an 11 on a scale of 1-10. Nothing is worth what this horrific drug has done to me."

• Joh...
• Taken for 6 months to 1 year
• April 21, 2018

For Dupuytren's contracture "Absolute waste of time and money. Even after my PPO coverage, I was still left owing more than $3,000. It was VERY painful, and only a few months after the treatment, my hands are back the way they were before I started. This is despite hand therapy 3 times a week and wearing a brace while sleeping. DO NOT HAVE THIS TREATMENT! Find another way - I suggest Needle aponeurotomy, which I did several times with great success."

• Xia...
• Taken for 1 to 6 months
• January 17, 2020

For Peyronie Disease "Terrible experience with Xiaflex! This is a very bad drug! It left me worse than I was! I wish I would have never done this. I felt a burst, worst bruising ever. So very painful! I still don't feel right, this has messed me up big time! This drug should not be used for this! Rating this drug as a 1 is too high!"

• Cha...
• November 14, 2019

For Dupuytren's contracture "I had surgery on my left hand and thought I would try this less invasive method. The pain of the injection and finger stretch was moderately painful. The problem is the contracture returned in 9 months and was worse than before the treatment, 60 went to 90 degrees."

• Dis...
• Taken for 6 months to 1 year
• November 3, 2022

For Peyronie Disease "Painful and stressful. It seemed to break up plaque a little after the 2nd round. No further progress after that. By the 3rd round, there was more plaque developing and curvature actually got worse. I only give it more than one star because I do believe it helps a few people, but not a high percentage. It was worth trying at least."

• Anonymous
• Taken for less than 1 month
• December 24, 2019

For Dupuytren's contracture "I would not recommend this procedure at all. I had a reaction to the injection, which caused bruising on my arm up to my armpit. It felt like my whole right side of my body was just not quite right, however, my Dr. said that it just couldn't be from the shot. It is a week and a half later, and my arm still hurts, and my little finger is bruised, swollen, and aches. The procedure was painful, and the manipulation of my little finger three days after the shot hurt, and I felt the tearing of the cord or whatever. My finger is still so swollen and bent that I'm not sure how straight it will be after it heals up, hoping upon hope that it actually heals and I can use it again. Again, I would not ever do this again!"

• dbt...
• March 26, 2021

For Dupuytren's contracture "It has now been a year since I had the injections. I did not experience pain to the extent that some people have posted. My injection resulted in about a 50% improvement, and it has stayed that way after one year. Still have a problem with it going numb in cold weather, but in spring and summer, it is not a problem. All in all, I feel it was a better option than surgery for me."

• Ext...
• Taken for 1 to 6 months
• October 10, 2022

For Peyronie Disease "I had my 4th injection from my urologist a month ago for Peyronie's disease. It was so painful all the muscles in my back locked up. Since those injections, I have barely been able to walk. So I went to my primary doctor, who said I have arthritis in my hip, but how suddenly the pain and inability to walk due to feeling like tendons were ripping made me think there’s something else wrong. The pain is only 3-6 inches away from my penis, so I thought maybe Xiaflex related. I had to read about bad experiences when used on people's fingers to find out that some doctors messed up and didn’t get it injected exactly where they should, and it trickled down onto tendons in hand, causing damage. So now I believe that maybe it trickled off the plaque down to the tendons toward my left hip. The inability to walk without extreme pain is just getting worse. It’s been a week, and my primary care doctor hasn’t called me back."

• Rus...
• December 21, 2020

For Peyronie Disease "I am very satisfied with how things have gone and am happy that I chose to go the Xiaflex route. I have had two sets of injections, with the third set scheduled. I started out with a 65-degree curvature and am now down to 20 degrees. I would be thrilled if I was left with no further improvement since 20 degrees is mild compared to where I was. Yes, the injections are painful, but that isn't surprising considering the location. And I experienced severe bruising each time and a bit of pain for about three days afterwards. I should add that I also have Dupuytren's, so that is the source of my plaques, not injury."

• Nev...
• May 11, 2021

For Dupuytren's contracture "Extremely painful and the outcome was no correction. The side effects were relentless itching after the painful injections, my hand and arm swelled 2x its normal size for a week after injections, and my hand was so painful I couldn’t even touch it. It’s only been two weeks and I am still experiencing pain and bruising. This drug should be taken off the market, in my opinion. A waste of time, money, and unnecessary complications for absolutely no reason! I’ll turn to amputation before I would ever do this treatment again."

• Ric...
• Taken for 6 months to 1 year
• November 26, 2021

For Dupuytren's contracture "In Feb. of 2021, I decided to have the Xiaflex shot. This was the most painful experience I ever had. The doctor did not give me a shot to deaden my hand. The bandage stuck to my hand at that site and felt like a needle was sticking in it. I passed out in the doctor's office when I had the bandage removed. My hand is now back to where it was before the shot. Xiaflex did not work for me. I tried the cream also, it did not work."

• Jer...
• Taken for 2 to 5 years
• August 20, 2021

For Dupuytren's contracture "I first developed Dupuytren's contracture in my early 60s in my right pinky finger. No history of this in my siblings, parents, or grandparents. I had Xiaflex injections and manipulation with very good results. The shot was painful, but tolerable. The manipulation was pretty easy (not aggressive). The doctor numbed my hand, then gently flexed my finger and the cord snapped (almost no pain). However, it needed to be done again (same finger) about 4 years later with a different doctor. That was about 3 years ago, and I continue to have a good result. Pain from that injection was about the same, but the manipulation was aggressive. My skin split and needed additional care. I have not had a recurrence in my right hand since. Since then, I have developed it in my left ring and pinky finger. I had Xiaflex injected in the pinky and ring finger yesterday and go back in 4 days for manipulation. Looking forward to a good result."

• Tit...
• Taken for 6 months to 1 year
• January 4, 2021

For Dupuytren's contracture "I received Xiaflex, and it was painful and ineffective. It’s only been 7 months, and my fingers returned to their previous contracture point. I had surgery 6 years ago on two different fingers for Dupuytren's, and they’re still straight. I would not recommend Xiaflex... expensive and a waste of time."

• kta...
• Taken for 1 to 6 months
• January 22, 2020

For Dupuytren's contracture "I was very disappointed with Xiaflex. I had a procedure involving 3 shots to correct Dupuytren's contracture in my right hand, small finger. Shots were very painful, and the syringe supplied by Endo 'blew apart' on the 2nd shot. The next day, the cord break left an open wound that could not be stitched and took several weeks to heal. The finger is still 20% bent and still has extra mass under the skin. Making matters worse, my copay was over $900. Previously, I had two operations for the same condition in different fingers. Much, much better approach and results, and less out of pocket."

• Las...
• Taken for 1 to 6 months
• January 14, 2022

For Dupuytren's contracture "DO NOT GO THROUGH THIS PROCEDURE! Money grab for the docs - more so than surgery. Awful pain for weeks and incredible bruising in my arm but felt it all the way to my right foot and groin. My husband referred to it as POISON - which I agree 100%. It’s been 2 months and the finger is retracting back in. I will never do this again - do the surgery instead!"