Hello Dr. Herazy,
I had one Xiaflex injection for my hand on a Wednesday, and had most of the normal reactions. Swelling in hand began to subside on following Monday. I had a large bruise about 2″ wide inside same arm that went from elbow to shoulder-very dark purple, then yellow, now gone (about 1 week total). My wrist on same side also showed bruise about 3″ square area.
Worst of all, I had an extreme back issue in an area where I have degenerative disc disease (L-4). I have lived with back episodes since age 15, now age 64. I have never experienced this extreme back pain, was taken to hospital via ambulance, when pain became so strong I could not move. I did help pick up a piece of steel on Monday, nothing unusual or extreme, then I had usual sore back until Wednesday AM, when I awoke and could barely get out of bed. I had to go to the floor, then work my way onto my feet. I could not turn, lean forward or backward or twist, lift anything. Tried ice pack, double dose Tylenol 3 with codeine, and Biofreeze. Finally became totally immobilized due to intense pain, called 911, went to ER, several muscle relievers and pain shots, came home and am taking medication now. In my adult life, I have never experienced anything near this intense. I wonder if the Xiaflex softened/weakened the tissue between the disc in my back enough to cause this problem.
I would like to hear if other chronic back patients who suffer milder problems same as I do every six months or so had an extreme reaction. Are there others with chronic bone/nerve connectivity issues who also had extreme occurring?
It seems plausible because of the reaction up my arm that the drug also could be carried into other parts of the body, weakening tissue.
Thanks.
Greetings,
I have explored this topic at some length for you. While there is some small suggestion that Xiaflex might migrate from the primary area where it is injected, the research – at this time – says that it would be stopped at the lymph nodes. In the case of Xiaflex treatment for a Dupuytren hand problem, this would mean it would probably go no further than the lymph nodes in the armpit. There is no current report of Xiaflex traveling throughout the body, as you suggest.
It would seem that the most likely explanation is that your extreme low back pain flareup was not much more than a coincidence. TRH
I too had the Xiaflex injection for Dupuytren’s contracture in the ring finger left hand, on Feb.14, 2017. Had manipulation surgery on Feb. 15, 2017. On the 14th I had some discomfort under my arm, (lymph node). By the 16th I was experiencing severe pain from my hand to the arm pit. On the 17th, I finally checked my underarm in the mirror and discovered a very large black bruise running down my arm. I informed the doctor’s office via E-mail with no response over the weekend until the 21st. The bruising continued down my side, and I started getting bruise circles about the size of dimes on my stomach. Now today on the 25th I woke up barely able to move with muscle spasms and pain in my back. So I too question if Xiaflex for Dupuytren’ s contracture actually stops at the lymph nodes!
Greetings Janice,
Recently I notice more and more people who have had Xiaflex injections for their Dupuytren’s contracture report reactions that are far removed from the hand; like you, symptoms in the back, head and elsewhere. This, of course, is serious because it suggests something else is happening beyond the Dupuytren’s contracture problem.
Many doctors like to promote Xiaflex surgery by playing down the risks and appearance of severe side effects. They like to say a Xiaflex procedure for Dupuytren’s contracture is just “a shot” into the fibrous tissue. The Xiaflex procedure is most definitely a surgical event as far as I am concerned, and should not be taken lightly. A simple process, indeed, except you can develop hand ulcers and nerve damage that require hand reconstructive surgery to correct, plus the recurrence of your original Dupuytren’s contracture!
Here is warning information from the official Xiaflex website:
“XIAFLEX® can cause serious side effects, including:
• Tendon rupture or ligament damage. Receiving an injection of XIAFLEX® may cause damage to a tendon or ligament in your hand and cause it to break or weaken. This could require surgery to fix the damaged tendon or ligament. Call your healthcare provider right away if you have trouble bending your injected finger (towards the wrist) after the swelling goes down or you have problems using your treated hand after your follow-up visit
• Nerve injury or other serious injury of the hand. Call your healthcare provider right away if you get numbness, tingling, increased pain, or tears in the skin (laceration) in your treated finger or hand after your injection or after your follow-up visit
• Hypersensitivity reactions, including anaphylaxis. Severe allergic reactions can happen in people who receive XIAFLEX® because it contains foreign proteins. Call your healthcare provider right away if you have any of these symptoms of an allergic reaction after an injection of XIAFLEX®:
– hives
– swollen face
– breathing trouble
– chest pain
– low blood pressure
– dizziness or fainting
• Increased chance of bleeding. Bleeding or bruising at the injection site can happen in people who receive XIAFLEX®. Talk to your healthcare provider if you have a problem with your blood clotting. XIAFLEX® may not be right for you.
“Before receiving XIAFLEX®, tell your healthcare provider if you have had an allergic reaction to a previous XIAFLEX® injection, or have a bleeding problem or any other medical conditions. Tell your healthcare provider about all the medicines you take, including prescription and non-prescription medicines, vitamins, and herbal supplements. Using XIAFLEX® with certain other medicines can cause serious side effects. Especially tell your healthcare provider if you take medicines to thin your blood (anticoagulants). If you are told to stop taking a blood thinner before your XIAFLEX® injection, your healthcare provider should tell you when to restart the blood thinner. Ask your healthcare provider or pharmacist for a list of these medicines if you are unsure.
“The most common side effects with XIAFLEX® for the treatment of Dupuytren’s contracture include:
• swelling of the injection site or the hand
• bruising or bleeding at the injection site
• pain or tenderness of the injection site or the hand
• swelling of the lymph nodes (glands) in the elbow or armpit
• itching
• breaks in the skin
• redness or warmth of the skin
• pain in the armpit
“Tell your healthcare provider if you have any side effect that bothers you or does not go away. These are not all of the possible side effects with XIAFLEX®. For more information, ask your healthcare provider or pharmacist.”
You notice the official warning information does not mention migration of bruising (hematoma) into the arm, armpit or abdomen, nor any of the other symptoms you now have. The bruising on your abdomen, or pain and spasms in your back is not consistent with the Xiaflex procedure or their warning. For this reason I am concerned.
In your case, Janice, I think you were correct to inform your doctor. Follow your doctor’s instructions. Keep an eye on the hand and injection area in particular. If you note any breaks in the skin anywhere on your hand, arm, armpit, back or abdomen, or any worsening of your current symptoms, or any new symptoms of any kind, immediately contact your doctor again and go to your closest hospital emergency room. Do not be passive or assume that any of this is a normal reaction.
Good luck to you. TRH
Since my first posting on February 25, 2017 about my experience with Xiaflex injections for my Dupuytren’s contracture, I am still having issues including, pain, sometimes severe in my hand, pain when raising arm, a cord developing up my arm through my armpit, the feeling of difficulty taking a deep breath only on the left side (same side as injections), weakness on left side from hand to shoulder. I told my Dr about issues I was having at the time (before the chord showed up) he suggested PT with ultrasound, I have not had an appointment yet, hopefully they will call soon to see if this helps!
Greetings again Janice,
Poor kid. Sounds like you are having a bad time of it!
Thanks for keeping us posted on how you are doing after your Xiaflex injections for Dupuytren’s contracture. I am sure our readers are interested in how you are doing, and what happens to your hand as well as all the side effects you are having. I am so glad you did not mention anything about skin breaking, tearing or erosion ulcers on the palm at the injection sites near your Dupuytren’s contracture nodules or cords. It is great that your palm is holding up because this seems to be a common side effect that can lead to some nightmare problems. Apparently your doctor has seen this kind of widespread pain reaction previously because he had a treatment strategy of PT and US ready for you.
By my calculations you had your Dupuytren’s contracture Xiaflex procedure done 24 days ago, and you still have what you call severe pain in that hand and new side effects are still popping up. Hope things will start to settle down for you soon.
You did not say anything about your ability to move the fingers that had the cords, so I only can hope there is at lest some small improvement you simply forgot to mention. There should be at least a little better finger movement considering all the side effects you are suffering.
Good luck, young lady, and take care of yourself. When you can please let us know how you and your Dupuytren’s contracture are progressing. TRH
Me again, Janice here. Yes my skin split, was told it was normal. I had 2 gaping wounds in the palm of my hand. As far as the movement, I can now close my hand, however cannot open all the way the cord has gone down some but is still there from first knuckle of digit to aprox 1 1/2 inches from the wrist.
Greetings again Janice,
Thank you for clarifying your hand situation after the Xiaflex injection for your Dupuytren’s contracture.
Information taken from the Endo Pharmaceuticals, Inc. website for XIAFLEX – collagenase clostridium histolyticum, states:
“Other XIAFLEX-associated serious local adverse reactions included pulley rupture, ligament injury, complex regional pain syndrome (CRPS), sensory abnormality of the hand, and skin laceration (tear). In a historically controlled post-marketing trial, the incidence of skin laceration (22%) was higher for subjects treated with two concurrent injections of XIAFLEX compared with subjects treated with up to three single injections in the placebo-controlled premarketing trials (9%). Cases of skin laceration requiring skin graft after finger extension procedures have been reported post-marketing. Signs or symptoms that may reflect serious injury to the injected finger/hand should be promptly evaluated because surgical intervention may be required.”
As you can easily understand from what is written by this Xiaflex pharmaceutical manufacturer, skin lacerations or tears after Xiaflex injection are mentioned among the “XIAFLEX-associated serious local adverse reactions” and in one study occurred at a rate of 22% of people injected with Xiaflex for their Dupuytren’s contracture. I suppose this is why you were told the palm splitting was “normal,” not because it was an OK thing that is no big deal, but because it happens so often. Skin splitting or tearing surely could not be considered normal in the sense that it is inconsequential, minor or an accepted, desirable or natural part of the Xiaflex procedure. From your brief description I will assume these two gaping wounds closed up well and are healing; my concern for you in this regard of palm tears and splits is when they are so progressive and deep that they are difficult to close and manage, like an ulcer that will not heal. I trust this has not been your Xiaflex experience.
Your further description shows you still have some problem with finger extension due to cord persistence. I am confident your doctor knows what to do in this case and will manage your current Dupuytren’s contracture to a successful conclusion.
Again, thanks for your candid look at what really happens to average people when they have Xiaflex injections for Dupuytren’s contracture. Good luck and heal well, Janice. TRH
I had one Xiaflex injection for Dupuytren’s contracture in my middle finger on a Monday, and had most of the normal reactions. On Wednesday, I felt pain on the inside of my arm by my deltoid and inspected the area. I had a large bruise (it was about 3″ long and 1/2″ side. The bruise was blue then yellow and gone in one week. I mentioned it to my Dr. and she said she had seen that side effect at least 3 times. She also said the Xiaflex Representative acknowledged that the company was aware of the side effect when it is used for Dupuytren’s contracture. Yet, there was really no mention of it in the Xiaflex Medication Guide that I received from my Dr.
Greetings LouAnn,
More and more news is coming out about this kind of reaction after Xiaflex injections for Dupuytren’s contracture. If you look around this website you can read various comments about bad reactions caused by Xiaflex. You will find several people who have had a reaction similar to yours, most of them a lot worse than just bruised tissue.
Probably the two worse cases resulted in destruction of the shoulder joint that required extensive plastic surgery and eventual replacement of the shoulder with an artificial shoulder joint.
It is my speculation that shoulder joint destruction results when the Xiaflex that is injected into the palm of hand does not stay thgere.
I believe it is picked up in the lymphatic duct system (you might think of it as the sewer or drainage system of the body that works to keep the blood and tissue free of tissue debris and infection), and it is deposited in the large collection of lymph nodes in the axilla (arm pit). Apparently, if a large amount of Xiaflex collects there it can destroy any tissue in the area that contains collagen, like muscle, ligaments, tendons, blood vessels and bone.
Of course, I have not examined you and I cannot comment in the same way as your treating doctor.
My advice is to be mindful and aware of the function and stability of that shoulder for the next few months. Please see an orthopedic doctor at the first sign of any unusual shoulder pain or limited movement, should that occur. Xiaflex injections for Dupuytren’s contracture is not the walk in the park the drug company would like folks to believe. TRH
I had the Xiaflex injections for Dupuytren’s contracture June 6, 2022. It is now October, and my finger joints are still swollen, and I cannot make a fist. I was wondering if anyone else had these symptoms. My doctor said to take vitamin C and Ibuprofen, but it has made no difference.
Greetings Charles,
Sorry to learn about your problem after having the Xiaflex surgery; yes, it is surgery.
Sounds like you could be having symptoms based on tissue damage and destruction to more than the excess Dupuytren’s contracture tissue. Of course, I do not know this for a fact, I am only speculating. But it is certainly possible that you could be having blood vessel and joint tissue damage, based on the frequency of poorly delivered Xiaflex injections. For this reason, your post-surgical complaints are not unusual.
My suggestion is that you get a second opinion from another doctor. Please go as soon as you can to a specialist like an orthopedic surgeon or a hand surgeon. Do not go to a general practitioner down the street or someone who is connected in any way to the doctor who did your Xiaflex procedure.
They can say that the Xiaflex procedure is not surgery, but that does not make it true. Xiaflex injections are a different kind of surgery with tissue-destroying enzymes are delivered without being able to see what is happening below the surface. This is the crux of the problem with the Xiaflex injection surgery. Some doctors are more skillful and careful than others. They get better results. But even when the immediate results are satisfactory, the patient is still faced with the recurrence of Dupuytren’s contracture anywhere from six months to five years or so later. It is just a matter of time.
Please get your hand looked at soon. You need an answer that explains all your current hand symptoms. TRH