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Author Topic: Question about the timing of LOA  (Read 637 times)

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Offline Wildgoat3

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Re: Question about the timing of LOA
« Reply #15 on: June 02, 2022, 06:42:33 AM »
Thanks for the information on the new drug being trialed Kay. It certainly does seem that it is going to be breakthroughs in the area of medications that is going to have the potential to make a real difference with AF.

I have been trying to get a referral to see a Rheumatologist and getting some push back. Seems the Rheumatologists see AF as the territory of the Orthopedic doctors, even though it is a inflammatory condition, which makes no sense to me. We all know how interested a vast majority of OS are in AF! I swear my doctor looked at me cross-eyed when I brought up Losartan!

I thought of you Kay when I came across this recent study, that focuses on medications, some of which I have seen you bring up in posts: "Perioperative Use of Antifibrotic Medications Associated With Lower Rate of Manipulation After Primary TKA: An Analysis of 101,366 Patients". It found a reduced incidence of MUA in patients who had been on certain drugs known to have antifibrotic qualities. It came out in the Journal of Arthroplasty a couple of months ago.

I have been doing some research around Resolvins and SMP's, Specialized pro-resolving mediators. There are some supplements on the market, one by Designs for Health which I consider a good supplement producer. Anybody have any experience or opinions on the use of these? I'm up to 4 grams of Omega 3 now, as well as back to intermittent fasting, to approach this issue systemically.

Offline DogfacedGirl

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Re: Question about the timing of LOA
« Reply #16 on: June 04, 2022, 03:16:50 AM »
Hi Myra,
Thanks for pointing out the new paper, it's an excellent study and I feel much more confident in suggesting the use of Losartan now!
Yes, it's a real shame that rheumatologists don't treat arthrofibrosis, and many don't even know it exists, or they think it's just some mechanical problem. I think that until this changes, there won't be significant improvements in how people are treated. But I don't know how this change can be made - maybe one by one as patients educate rheumatologists, when they find somebody that will work with them and is prepared to learn. Or perhaps we can find the ultimate "influencer" among rheumatologists to do this  :)
Your energy and commitment are impressive! Regarding fish oil, I like to check any supplement on ConsumerLab's website. They're an independent lab that uses subscriber payments to fund their analyses of supplements. They don't seem to have tested Designs for Health omega 3, but they found that, among the high strength capsules, Spring Valley Maximum Care Omega-3 2000 mg was the lowest costs/unit of DHA+EPA. Then came Solgar Triple Strength Omega 3 950 mg and Nature Made Fish Oil 1,400 mg. On the negative side, they found that the batch of Viva Naturals Antarctic Krill Oil they tested contained arsenic and the batch of Freshfield Vegan Omega-3 DHA + DPA contained only half the claimed amounts.
Kay
1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline Wildgoat3

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Re: Question about the timing of LOA
« Reply #17 on: June 05, 2022, 04:27:07 PM »
Thanks Kay.

Thanks for reminding me about Consumer Lab - I used to subscribe to them years ago but had forgotten about them. I'm curious if you see any value in a supplement that isolates out the resolvins (assuming they are legit in their claims off course) or do you think just taking the Omega 3's and letting our body do the rest is just fine.

I am beyond frustrated with my referral to Rheumatology not being accepted. I also thought I was going to be able to work with an OS in another region, but within my health plan, who I had high hopes for being much more qualified for doing the LOS I know I need, but it looks like that is probably falling through.

I alternate between "energy and commitment" and utter despair. There are many hours on my dark days where all I do is lie on my couch and cry. Today is one of those days. Almost everything in life that brings me joy, is physical. I can no longer hike, no longer trail ride or take my mule on long riding vacations around California, no longer garden, no longer tend my 20 fruit trees - the list goes on and on. I will have to sell this beautiful 10 acres that I have poured my soul into for 35 years if I cannot get this knee fixed. I am devastated by the loss. So I research, and learn, and fight with my health care system, and try to decide what to do next. 




Offline DogfacedGirl

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Re: Question about the timing of LOA
« Reply #18 on: June 06, 2022, 02:38:08 AM »
Hi Myra,

Hang in there, I think we've all been where you are. All of the things you say ring true for me too, but thankfully I'm past the depression stage now. It seems to me that the most physically active people are more likely to get arthrofibrosis, it's like a cruel joke. Maybe we all push too hard to do the post op PT and the things we love.

I know I've said all this before, and some of it might not be possible, but to sum it up, if I were you I would try to get a trial of a TNF-a antibody like Simponi, to see if it helps. It helps some people and gives them a lot more mobility, and it also helps prevent depression since the main cause of depression is inflammation (read "The Inflamed Brain").

You're already eating a high fibre and low sugar/processed carbs diet and doing intermittent fasting and omega 3's (and no, I don't thing the extra expense of the more highly purified ones are worth it), try adding low dose aspirin if your medical condition permits.

The other things that should help are daily sunbathing to get the near infra-red radiation, this is a powerful thing. But make sure you don't burn, or you'll get increased inflammation instead of decreased. You can wear sunblock and light clothing, the NIR will go through them.
 
Also, hypothermia and hyperthermia decrease inflammation. Build up with these slowly, and don't do them if you have a heart condition. I swim at a local pool for the hypothermia because it's winter here and the pool is really cold, but I have to do a highly modified stroke with minimal kicking and fins on so I don't upset my Hoffa's Fat Pad. Of course, an ice pack on a knee is isolated hypothermia, and that works well too.

For hyperthermia I do a very hot bath 2 days out of every 3. I have an indoor/outdoor thermometer and I drop the outdoor part into the bath to track the temperature. The research says that 39 to 42 oC for 20 minutes or more has the best outcomes. As mentioned, build up slowly (over weeks) because your body takes time to adapt, and sit for a while after the bath water is released because you don't want o black out from standing up too quickly. You might have access to a sauna which would be good. Also, don't immediately go from very hot to very cold, it is too much of a shock. Wait for 5 minutes or more.

There are a lot of complex biological pathways affected by the things mentioned above, but the science is sound and the outcome is lower inflammation. Our bodies are meant to be a little stressed in a physical sense and doing this is helpful. Exercise is another stressor that is beneficial, but of course, we need to avoid stressing our knees any more with exercise since they're already over-stressed. But you might be able to do upper body exercises at a gym, or swim with just your arms.

Keep pestering you doctor for another referral to a different rheumatologist. There are a couple of specialist review sites online, like WebMD and Doctoralia that I've used to find a good specialist in the past.

Try to meditate daily as well, it will take time to master but it also has powerful effects on inflammation. It stimulates the vagus nerve in the same way as the implanted electrical stimulators do, this is a relatively new treatment for inflammatory conditions like rheumatoid arthritis and maybe one day people with arthrofibrosis will be able to access it.

Take care,
Kay

1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline Elce

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Re: Question about the timing of LOA
« Reply #19 on: June 07, 2022, 02:36:58 PM »
Hi Myra,
In my many searches on the internet for my knee issues I came across a story of USA doctor who developed arthofibrosis after tkr. He believes it happened as a result of his aggressive pt rehabilitation protocol post tkr. He stopped his pt and re started but a much more personalised pt therapy which he now advocates. He also wrote a book about that.
I have not been able to find the link to his story you may have better luck if you are interested to find out more.

Hi Kay, Thanks for posting information about the new drug being trialed for fibrosis. I just wish they speed up with approval of this new drugs that can people.

Offline DogfacedGirl

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Re: Question about the timing of LOA
« Reply #20 on: June 09, 2022, 10:12:17 AM »
Hi Elce,

Yes, there is a huge unmet need for an effective treatment!

I think the doctor you're referring to is this one: https://www.oregonlive.com/health/2018/12/im-a-doctor-but-even-i-couldnt-explain-why-my-knee-wouldnt-heal.html

Kay
1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis

Offline Elce

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Re: Question about the timing of LOA
« Reply #21 on: June 09, 2022, 10:48:05 AM »
Hi Kay,

Yes, that is the one.

Offline Wildgoat3

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Re: Question about the timing of LOA
« Reply #22 on: June 09, 2022, 02:31:54 PM »
Thanks Elce for referencing the story by the doctor - that was certainly my case as well that the PT was too aggressive following my knee replacement. That, combined with my first follow up with my OS was a TELEPHONE visit at six weeks, were key parts of the poor care that led me to where I am today.

Thanks Kay for the encouragement and suggestions. It makes perfect sense to me what you say about our bodies do better, as I think of it, under the conditions we evolved under; outdoors, periodic food insecurity, extremes of weather, etc. Traditions such as seat lodges and fasting have been a part of humanity for eons and not surprising to me that science is now "discovering the benefits" I don't think I can safely get in and out of my bathtub so maybe the is my medical justification to put in a hot tub!

How long do you suggest being in sunlight to get the benefit of the infra-red spectrum?

I am going to go to the gym this weekend and try swimming with a pull buoy. They also have one of those upper body exercycle machines so I can start trying cardio on that. I know I have been avoiding going back to the gym because it is another one of those things that reminds me of of who I used to be and no longer am. I used to work out 3-4 days a week doing serious cardio and weight training; I am a shell of who I used to be . . . I joke that muscle wasting and depression are a great weight loss formula. Hopefully I won't have to duck into a bathroom stall and cry for a while! Wish me luck.

Offline DogfacedGirl

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Re: Question about the timing of LOA
« Reply #23 on: June 11, 2022, 05:25:38 AM »
Hi Myra,

Good luck with the gym!! I think that you'll feel quite a bit better for going after you move past the grieving.

Try to be out in the sun as much as possible with the necessary precautions against sunburn. As far as sunbathing itself, that varies a lot depending on latitude, the seasons, and skin type, but you probably know about how long you can sunbath for without burning. I always play it safe since burning is a really bad idea. In summer I only expose each side for 2 or 3 minutes, Australian sun in summer is fierce and I'm fair skinned. But in winter it's pretty much impossible to burn, so 20 minutes a side isn't too much.

I have my near infra-red panel now and since it's winter I'm using it each day on my knee, and I also do a 20 minute session on my back. I haven't used it for long enough yet to be sure of the effects, if any, but one unexpected side-effect seems to be that I'm sleeping much better. I'm sleeping right through the night since I started doing my back, and the NIR does stimulate melatonin production so there is a scientific reason why this might be a real effect. The NIR is not visible, and there is only a slight warmth.

Kay

1999 Osteoarthritis both knees, chondroplasty
2004 MACI graft L knee
2005 MACI graft both knees
2007 MACI graft R knee
2007 Patella baja
2011 TKR both knees
2011 arthrofibrosis















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