Forum Replies Created
2 May 2022 at 5:04 pm #890
Thanks, and all the best for your surgery! Feel free to ask more questions – as you probably know going easy on the leg exercises is very important.
I would appreciate it if you let me know how you go. You can use the “contact us” email if you like to keep it private.
Kayley29 April 2022 at 8:00 pm #888
Thanks for your question, it has lead me to some informative reading that’s helpful. I don’t know much about sulphasalazine, so I’ve been doing a little reading of the scientific literature. As you may know, this is an old drug that has been used to treat a range of inflammatory conditions, sometimes together with hydroxychloroquine. Sulphasalazine can, however, have some serious side effects including organ damage and loss of male fertility (the latter is usually reversible as I understand it).
The reason may be this. Sulphasalazine is broken down into two molecules by gut microbes, these molecules are called sulphapyridine (SP) and 5-aminosalicylic acid (5-ASA). The SP creates oxidative damage and sometimes allergic effects, and it’s thought that it’s this part of sulphasalazine that creates the majority of the serious side effects.
However, you may recognise the chemical composition of the second molecule, 5-ASA, since it’s structurally very similar to the acetylsalicylic acid found in aspirin. Aspirin is well known and widely prescribed for treating heart fibrosis (heart disease), and I have advocated for its use in treating arthrofibrosis, together with omega 3 fatty acid supplements, for some time. Unfortunately, aspirin can cause bleeding and stomach ulcers in the longer term, especially at the higher doses.
The good news is that there is a medication called mesalazine that only contains the 5-ASA, and the side effects are reportedly fewer than for Sulphasalazine – you can check with your rheumatologist about this. Mesalazine is widely available and used for treating inflammatory conditions, and is beginning to be investigated for treating fibrotic conditions.
A 2021 paper by Hoffman et al. (see below)1 studied the anti-fibrotic effects of mesalazine in heart cell culture. I’ll quote their findings “We found that mesalazine reduces fibroblast proliferation, myofibroblast differentiation, and collagen deposition after TGFβ induction. Furthermore, mesalazine ameliorated TGFβ-induced changes in fibroblast mechanical properties, such as cell stiffness, stress relaxation, and cell adhesion. Finally, we shed new light on the molecular mechanisms of mesalazine: we propose dual inhibition of SMAD2/3 and ERK1/2 phosphorylation as a novel concept by which mesalazine may prevent cardiac fibrosis.” This is very interesting because they found that mesalazine downregulated all the major pathway involved in fibrosis.
But we shouldn’t get too excited because this is only one study and it was only done in cell culture. However, this is an old and widely used medication that has been shown to be useful. Also, I’ve only just begun to read about this, and more reading is needed. Nonetheless, it seems that mesalazine may be a better medication to try than sulphasalazine, and it would be worth discussing this with your rheumatologist. I’m happy to communicate with him/her if they would like more information about the arthrofibrosis side of things.
I hope this helps.
1 Hoffmann, M. et al. Repurposing mesalazine against cardiac fibrosis in vitro. Naunyn Schmiedebergs Arch Pharmacol 394, 533-543, doi:10.1007/s00210-020-01998-9 (2021).24 February 2022 at 11:00 am #880
Harry looking at all of your posts you appear to be using this website for advertising, and I have removed most of your posts. This is not the purpose of this site, and you will be de-registered if you persist.
14 December 2021 at 8:44 pm #868
- This reply was modified 4 months, 1 week ago by Kayley Usher.
That’s terrific news, thanks very much for letting us all know!
Be sure to take the CPM slowly and carefully, as per the info on CPM under “Key Points”, and never go past discomfit into the pain zone. It will take time and patience.
We would love to hear how you go.
Kayley10 October 2021 at 9:25 pm #841
It’s a Continuous Passive Motion machine, which will do cyclic bending and straightening of you knee to the degrees that you set. You can gradually increase the degrees of bend and straightening over time as your tissues stretch. This is a good way to increase ROM when it’s performed on a daily basis, but if you’ve had arthrofibrosis long-term you may need to continue doing CPM because you will likely lose ROM when you stop.
Anyone looking to buy one should look for one that has a hand-held digital controller, and should always stay within the pain-free zone. There will be some discomfit at the limits of ROM but you don’t want to tear tissues.
There is more info on how to use a CPM under “Key Points”, and a photo of one. Some hospitals in the US sell recon CPMs on Ebay.
Kayley9 October 2021 at 7:40 pm #836
Hi again Mike,
I’ll summarise what I know about Xiaflex – well actually what I know about about collagenase from the bacterium Clostridium, as this is what Xiaflex is. As you know it’s a relatively new treatment for Dupuytrens and Peyronies diseases, which are related to (are forms of) fibrosis. It is currently being trialled for a couple of types of fibrosis and it is an interesting potential therapy, but comes with risks.
PROS – being a collagenase (an enzyme that breaks down the collagen that makes up scar tissue) it will probably help to break down the scar tissue in joints, and increase ROM. This might help to settle the fibrosis down, but this is not known.
CONS – 1. there is a lot of structural collagen in joints, including in tendons and ligaments, and there is a real risk that you could rupture one or more after treatment. Our 2019 paper on says ” collagenase may damage articular cartilage, ligaments and tendons, but trials show no negative effect on these structures. Repeated injections needed, increases ROM in shoulder arthrofibrosis. More trials are needed”. There is some recent research using rats that suggests that collagenase might prevent arthrofibrosis, but this is a different thing to treating established AF.
2. Collagenase will create an inflammatory response, since both the collagenase and the resulting collagen fragments activate immune cells. As you know, inflammation causes fibrosis, and because the cells that make the scar tissue (myofibroblasts) remain, they may become more activated and create more scar tissue, in a similar way to surgery.
I think that a procedure such as an MUA where the joint is forced to bend and/or straighten after a collagenase injection would greatly increase the risk of tendon/ligament rupture, and I feel that this would not be wise. MUAs are well known to cause this type of damage without collagenase treatment.
Even if the collagenase injections worked (you would need more than one injection) there is a real possibility of the arthrofibrosis returning.
Thanks for suggesting Xiaflex and sorry I can’t be more positive about it, maybe in the future there will be evidence to show that collagenases are safe and effective to use in large joints, and I would be very happy about that!
9 October 2021 at 11:40 am #835
- This reply was modified 8 months, 3 weeks ago by Kayley Usher.
Thanks for the update, I really appreciate it!! Do you think the pedalling has increased your ROM? It might be difficult to tell the effects of the CPM apart from the pedalling. It’s great that you were able to get a CPM, and have the determination to use it.
Could you please tell us the name of the company that sold the CPM, in case they have any more of them for sale?
I haven’t heard of Xiaflex but it sounds like a very interesting possibility. I’ll read some papers and get back to you.
Have a good weekend,
Kayley24 August 2021 at 3:46 pm #783
My InFLAMia T shirt has arrived! See https://i.imgur.com/9z71PuK.jpg
This is the original design, I have put a border around it and changed the position and setting of the text recently, so stand by for the next T shirt 🙂 It will be grey, I think the paler colours in the design will be stronger when printed on a pale background colour.
Kayley22 August 2021 at 4:05 pm #752
See the New Superheroes page to meet FibroSIS in person!18 August 2021 at 9:33 pm #733
Thanks very much for the update, that’s fantastic that you’re able to cycle!! That is really good news! The fact that this exercise doesn’t increase pain etc suggests that you don’t have active arthrofibrosis (which involves inflammation). It’s good that you’re taking the exercise carefully though.
That’s really interesting about the Pendulum Pedal, I didn’t know that. Maybe I need to add a new web page for things that people have found to be helpful. What do you think?
Regarding your bad back, myself and many people I know have back trouble, and have found the a stretch in the McKenzie method transforms a really bad back into a normal one – so long as the stretches are done every day. I make them part of my normal daily routine, like brushing my teeth, and it only takes a minute or two. A friend recommended the book to me years ago, see https://www.mckenziemethod.com/products/pain-relief-self-treatment-books/mckenzie-method-treat-your-own-back-book/ If you go to this link you can see the book is open to a page of showing the stretch that I do, I don’t worry about the other stretches.
Regarding more surgery, I do have a cautionary approach. Surgery does help some people, but since you have Dupuytrens the scar tissue is likely to return. In addition, there is an increased risk of infection because you have a prosthesis, and of course there is always the risk that your arthrofibrosis will become active due to another injury (surgery), and you could end up much worse off. If I were in your position I would keep riding your bike carefully and within your limits, and yes, I do think that over time you will slowly increase your ROM. Because your inflammation appears to be under control, your body should be able to slowly break down the scar tissue. However, there is always the question of how your Dupuytrens will influence this process – that is an unknown, at least to me. A rheumatologist my know more about your response.
Also, to be frank, I’m not aware of a rehab centre anywhere in Australia that is knowledgeable and experience in treating arthrofibrosis. This is a very rare thing anywhere in the world.
I look forward to hearing how you go.
Kayley10 August 2021 at 3:31 pm #726
Meet InFLAMia! You are welcome to download her (right click on the image in Superheroes and save image) and have her printed on a T-shirt or car sticker. Please let me know what you think, and if you download her.
Kayley10 August 2021 at 3:28 pm #725
How are you going? I’m just back from a camping holiday in the Australian outback, it was very relaxing.
Yes, CPM is often not prescribed. The few good quality clinical studies that examine its use do so in the general surgical population, and not in arthrofibrosis patients, so the beneficial effects are washed out by the large numbers of people who don’t need to use it. In addition, I believe that CPM is not used frequently enough, or for long enough, in these studies for sustained benefits.
I need to clarify that “passive stretching” is stretching that does not activate the muscles of the limb being treated. If the muscles are activated this is active stretching (equals exercise), and unfortunately exercise is well known to generate inflammation. However, each person’s inflammatory status will be different, and given your medical history, your AF drivers may be different to the typical inflammatory drivers that involve chronic inflammation. The amount of pain is a guide to this. Perhaps your AF drivers are more to do with collagen production or turnover and you might be able to exercise more than many people with AF are able to.
In any case, I suggest that you take the bike riding very slowly and carefully. It is very easy to overdo exercise and end up worse off. However, if you find that your pain and ROM are not negatively affected by your bike riding, then that’s terrific! The riding most likely won’t improve your ROM unless you are stretching the knee to the maximum (pain-free) amount on every cycle, and gradually increasing this degree of ROM, but movement is healthy. For those in the situation where they can safely ride a bike there is another pedal arm available called the Orthopedal, see https://www.orthopedal.com/
If you find that your knee is worse after riding then you should still be able to exercise the rest of your body safely to gain the benefits that brings.
It will be good to hear how you’re getting on.
Kayley22 July 2021 at 4:49 pm #698
Better make that the AF Team 🙂
Kayley9 July 2021 at 5:50 pm #683
You have a great approach to life! You sound very pragmatic.
I do understand how frustrating and limiting not being able to bend your knee is.
I’m not familiar with Headspace, but the evidence suggests that when performed correctly mindfulness and mediation benefits most people, with the possible exception of people with schizophrenia. If you’re a relaxed person you may find it easier to focus on your breathing or something else, and you may not need an app to help you to learn mediation.
A surgeon who knows about the pathology of arthrofibrosis is likely to refer you to a rheumatologist. Many surgeons will be happy to do more surgery, but in my opinion this is not necessarily the best option, especially while your inflammation is high, because arthrofibrosis is an overly enthusiastic response to a wound, and surgery makes a wound. Your experience with your last surgery will be some guide for you. Did your knee become better or worse after it? Unfortunately, there are no easy answers.
Kayley9 July 2021 at 12:07 pm #679
Thanks for the photo, yes, your knee is swollen, which indicates ongoing inflammation. Even knees with less swelling than yours does can have significant inflammation.
I’m glad that you’re discussing the Celexi. I can provide information but not medical advice, as I’m not a clinician.
I’m also glad that you’ve had the tests for infection and mechanical issues.
There is good evidence to show that mindfulness and meditation reduce inflammation and benefit health and sleep, and I will write about this at some stage. I have read that an independent review found Headspace was the best rated app for meditation, however, I’m not familiar with it. Some people find yoga, Qigong and similar mindfulness practices helpful, although people with AF may find some of the movements are not possible.
Perhaps you would be able to hire a CPM for a while? Some companies hire medical equipment like this, but it can take work to find them.
All the best,