Thanks for the great update, that's terrific that your knee is starting to settle!! I wouldn't have thought of putting rhubarb into smoothies 😊 All the best, and please do remember to continue to treat your knee with care, even when it feels fine. Kayley

Thanks a lot for the explanation and the doctor's info, that's really helpful! It sounds as though hydrodissection could be useful for treating at least some forms of arthrofibrosis. Kayley

This is really helpful and interesting to know Marisa, thank you so much for sharing your experience!! I'm curious to know if you had knee pain before you had the ultrasound guided hydrodissection, and if so, did the procedure help reduce it? If you're comfortable, please feel free to share the name of the doctor who performed the hydrodissection, and city. Kayley

Hi Joanna, Thanks for your message, your husband has has been through so much!! You're probably aware that I'm not a clinician, and I can't give medical advice, but I can share my thoughts based on the science and my experiences. I'm glad that your husband is using CPM, the more that he can do this in the early post-operative phase, the better, some people sleep on it to prevent the adhesions and contractions that are particularly strong in the early post-op phase. However, it is Really important to do CPM in the pain-free range, it's not intended to force range of motion, and if it makes the knee unhappy he should back off. Some discomfit is OK, you'll find more about what I mean and other good info about CPM on this page https://www.arthrofibrosis.info/cpm Your husband has likely been advised to keep icing and elevating as well, and to use crutches to support the healing joint. The period of time that people need to use these therapies varies with the individual, and how the knee feels is the best guide. Some people need to be on them for several months, and there is no downside to this, apart from inconvenience. Please don't be tempted to rush or force the knee in any way, his biology is in total control and the best approach is to keep it as happy as possible. It will take time (many months) to settle the knee and this can't be rushed. I suggest that anything that makes the knee unhappy during, or afterwards, is stopped for a time. It's not possible to build muscle while there is a lot of pain and inflammation, and exercising the affected leg will likely cause worsening of symptoms, at this point in time. Scar tissue is a normal reaction to surgery and your husband should expect that some will return, along with some reduced range of motion, but this is normal. Please don't let anyone try to forcefully bend the knee (or straighten it), even minor tissue tears are a powerful stimulus of fibrosis. The IAA believes that the only one who should have "hands-on" should be the affected person, because only they can feel the limits of their range of motion. Your husband may benefit from a telehealth consultation with one of the most experienced arthrofibrosis physiotherapists in the world, Sebastiano Nutarelli. His contact is info@eukafcenter.ch Many other physiotherapists don't understand arthrofibrosis pathology and believe that they have to force "compliance" of the joint, which I feel is a very dangerous approach, and we're trying to counter this idea. All the very best, and please feel free to ask more questions. Kayley

Hi Jessica, We discuss the role of Substance P, and other factors released in response to pain, in the blog 'Why Pain Control is Important", see https://www.arthrofibrosis.info/post/why-pain-control-is-important . I hope that helps, let me know if you have more questions. Kayley

Hi, That's a good question. Unfortunately, it's something of a myth that shoulder arthrofibrosis will resolve on its own. Our blog on the topic says " It’s a common assumption that shoulder arthrofibrosis completely resolves over time, but recent studies indicate that this is not accurate [6] and around 40 % of people still have symptoms after 4 years [5]". Arthrofibrosis in knees is less researched than in shoulders, so we don't have solid statistics on outcomes with different treatments. Knees also "hammered" from full body weight during standing and walking, with structures like the Hoffa's fat pad getting pinched and further inflamed. But each knee is different in terms of severity and location of scar tissue - which structures are scared - and this has a large impact on how effective CPM is. Some knees require ongoing daily CPM to maintain bend, while another knee (even on the same person) won't need CPM at all, despite having internal scar tissue. So, we can't make blanket statements, but from the treatment of scar tissue in general the best evidence is in favour of regular (daily) pain-free passive stretching. CPM is one form of passive stretching and it seems that if your knee lacks bend (as opposed to extension) and is painful after activity then it's more likely that pain-free CPM will be of benefit. Exercising the affected limb is much more controversial and can lead to worsening symptoms. In the end, you're the expert on the topic of your knee, and your experience with how it reacts to various things is the best guide. I hope that helps, Kayley

Hi again Greta, It's difficult to find quality studies on BPC-157. The great majority of papers are from a single group, who do not explain the mode of action. However, I would be extremely cautious about trying BPC-157, since its reported activities such as increased angiogenesis, proliferation and activation of fibroblasts and increased collagen formation and maturation are all central to fibrosis pathology. Unfortunately the paper in the first link is, in my opinion, very poor quality, and I simply do not believe the claim that this compound is able to re-grow cartilage. I have not looked at the quality of the second paper, but the finding of increased healing in mice, plus the pathways that are activated, again give cause for concern in the context of fibrosis. There has been a lot more focus on improving healing (for ulcers) rather than damping it down (for fibrosis) in research, and I'm always careful about therapies that improve healing as a lack of healing is at the opposite end of the pathology spectrum. I personally would also be careful about taking a "wellness" compound that is not regulated and quality controlled, since there is a long history of dangerous compounds and unpredictable levels of active ingredient in this type of thing. I'm sorry I can't be more positive. Please do ask if you have more questions. Kayley

Hi Greta, Thanks for your question! I'm not aware of BPC-157, I'll read the scientific literature and get back to you. Kayley

Hi Daryl, Unfortunately, we're still looking for funding to run a clinical trial on PXS-5505, so it's still some years away. Yes, there are studies using animal models of arthrofibrosis and cell cultures that show Relaxin 2 is effective and safe, but so far as I know it doesn't yet have regulatory approval for sale. This paper is freely available if you want to read more: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9948766/ The researchers used an encapsulated version so that multiple injections into the joint weren't needed. Let me know if you have further questions. All the best, Kayley

Hi Alan, No, the probability of success depends on the variables associated with the individual case. You could use an analogy using a criminal case. Lets say that overall, there is only a 30% rate of successful prosecution of suspects. However, there is a weapon with your client's finger prints on it, several witnesses and security footage that clearly shows your client leaving with the stolen items. We would conclude that there is a greater than 30% chance of successful prosecution in this case. Given what we know about the central role of LOX in scar tissue formation, and how scar tissue maintains myofibroblast activation, I believe there is a good chance that PXS-5505 would be effective and an important part of a treatment plan, especially early after surgery, but of course there are no guarantees. Kayley

Thanks for the question Alan. The answer is “no”, the percentage of successful outcomes from all clinical trials can’t be applied to the probability of any individual trial succeeding. Unfortunately, we still haven’t found funding for this trial yet. Kayley

Thanks for the great feedback! Kayley

Hi, Thanks for your excellent question. I hadn’t heard anything about this so I did a quick search of the scientific literature. There is a scientific consensus that nicotine powerfully promotes fibrosis and scar tissue production in all tissues of the body, I’ll copy some of the titles of papers below. Consequently, I feel that it would be very unwise to try nicotine in any form. I was not aware of this link, it does raise an interesting issue regarding people who smoke and their risk of arthrofibrosis. Kayley Titles of papers. General mechanisms of nicotine-induced fibrogenesis…In many organ systems, nicotine modulates fibrosis by altering the functions of fibroblasts. This review discusses the role of nicotine in the general fibrogenic process that governs fibrosis and fibrosis-related diseases, focusing on the cellular mechanisms… Nicotine is an independent potential fibrogenic mediator in… Nicotine facilitates pancreatic fibrosis by promoting activation of…

That's great. Please don't feel that you should stop CPM at 4 weeks, every knee is different and your knee may well need it for longer. You are the best judge of the need to continue (or not) by how well the knee goes through ROM. Kayley

Hi, I wouldn't like to guess at the impacts of taking arcoxia for 16 days. Aspirin will have the recommended dosage on the packet, but please check with your doctor first to make sure it's safe for you to take it. If you intend to take aspirin in the long term you can use a low dose that is encapsulated to protect the stomach. The usual low dose is around 80 to 100 mg/day. I believe that CPM (continuous passive movement) is important to help prevent adhesions and contractions of tissues, but needs to be very frequent and regular. Please see the information on this website. You can also contact the European Knee Arthrofibrosis Center for advice at info@eukafcenter.ch. They do telehealth. All the best, Kayley

Thanks for sharing your experience with the caring and thorough rheumatologist Dr Vereczkey, that will help other people. Kayley

There are a number of papers citing HMGA2, one is Mejia Granados, D. M., de Baptista, M. B., Bonadia, L. C., Bertuzzo, C. S. & Steiner, C. E. Clinical and Molecular Investigation of Familial Multiple Lipomatosis: Variants in the HMGA2 Gene. Clin Cosmet Investig Dermatol 13, 1-10 (2020). https://doi.org/10.2147/CCID.S213139 I hope that helps, Kayley

Oh actually, with more reading it seems that emodin is a laxative and there is no good clinical data on appropriate doses, it can be toxic at higher doses. So it's back to eating rhubarb :-) Kayley

Hi, I'm glad that your rheumatologist was helpful and tested you for autoimmunity! would you mind sharing the name? We're always on the lookout for helpful rheumatologists. I'm not a clinician so I can't provide medical advice, but I wonder how much additional benefit there would be from genetic testing. The test you have already had for autoimmunity has revealed a significant variation that is likely impacting your arthrofibrosis. There could be additional factors, the downside to genetic testing is that in some countries you may find it difficult or extremely expensive to get health insurance if there is a positive result, so you should be informed about this aspect. Kayley

Hi, This is a great question! I don’t know much about lipomas so I’ve had a quick look at the scientific literature. For those who have not come across them, lipomas are benign fatty lumps under the skin. Here are some quotes from papers: “Lipomas are defined as a common subcutaneous tumor composed of adipose (fat) cells, often encapsulated by a thin layer of fibrous tissue…(although usually under the skin) they can be intramuscular and intermuscular lipoma, lipomatosis of nerve, lipoma of the tendon sheath and joint.” “frequently, patients may have more than one lipoma, and occasionally they may have a genetic condition resulting in multiple lipoma”. There are different variants. “fibrolipoma is a rare lipoma variant featuring prominent fibrotic areas”. “Genetic variation mostly involving the HMGA2 gene. Hmga2 enhances the activation of transforming growth factor-β1 (TGF-β1).” So, while there is no established link with arthrofibrosis, if you have the HMGA2 gene variant this could, in theory, make you susceptible to arthrofibrosis. TGF-β1 is the key growth factor involved in fibrosis pathology. A compound called emodin in rhubarb has been reported to downregulate the HMGA2 gene. I understand that emodin is a commonly used drug, especially for heart conditions, so it might be possible to get it prescribed it off label. I'll be interested in reading more about this compound to see if it could be useful in treating arthrofibrosis. Kayley