Arthritis in the UK

[Old Garage-Bander]

Thank you for being in those clinical trials! I'm glad you found an effective treatment for your RA. Randomized, double-blind, placebo-controlled clinical trials are really the best way to determine effectiveness of any therapy. To the participant, it offers opportunity to try new therapies, sometimes years before they are available to the public. But it takes courage to sign up for a drug that has had limited testing in humans, so kudos to you!

Your post points out a couple of important reasons to get a diagnosis that is as accurate as possible: specific therapies are available for different types of arthritis, and the risks of other organ system involvement in autoimmune arthritis. Thanks for sharing your story!

Rock on, OGB!

Thanks for you kind words.

 

[Old Garage-Bander]

I have some osteoarthritis, it runs in my family. I manage on occasional use of codeine/paracetamol, single dose per day, used before activity when I know there will be pain, but I wait for an hour so my brain adapts to it before trying the activity that causes pain. Paracetamol is not good for the liver, so if you ever need it to be regular, go with DrThumpenstein's advice and get some checkup that lets you know if you're safe to use it more than a minimal and occasional use. AFTER anything that has caused pain and inflammation I will sometimes use ibuprofen, because I have learned that like allergies, breaking the cycle with a brief intervention can help avoid the need for prolonged dosing. I ran that notion by a doctor after having figured it out by my own observations (and a similar situation with fluticasone furoate for hay-fever like symptoms). He agreed, and said that similar self-perpetuating feedbacks exist in the body, and many conditions arise purely because easy regulation has failed to work. I back off on all such meds when possible, they tend to work better when I need them next if I do that.

Regarding asking for medical advice online, I have had doctors tell me it's fine, if we're careful. They're all for INFORMED consent, and they like it when we make the effort, and it certainly beats being inundated with the 'worried well'!

Last but not least, if in doubt, and a doctor isn't helping, get a second opinion! You may NEED a diagnosis, likely also an X-ray. At that point you're free to accept advice or treatment as you decide, or to refuse it outright, but whatever you do, you need as much certainty in diagnosis as you can get before that kind of decision, even if it's just to narrow the range of advice given by most medical sites out there.

And if an actual doctor is posting HERE, all to the better, we're damn lucky to get anything like a house call these days.

Afterthought: if you buy oranges in bulk for saving money, maybe avoid that, I discovered that too many oranges WILL provoke some excruciating pain in existing arthritic joints. No-one told me about this, but I learned after three boxes over two years, that the timing of events was undeniable. If I moderate the oranges, there is never that kind of pain. I was told that food sources of purines were a thing to watch, but I love marmite and never got pain after it, but oranges were a different matter. I don't go with hugely complex dietary advice, we're born to be omnivores, but it's worth avoiding any proven specific once you discover one. Oranges may be fine for you, but something else may not be.

As is the case for most things, we have to weigh the pros and cons in our medical decisions. There will always be a tradeoff between joint pain and swelling, which is very damaging in it's own right, against the other long term impacts, known or otherwise. It certainly seems that we haven't evolved to process the barrage of medications we find ourselves considering, for an increasing number of afflictions. I hope we, as a species will find a way to overcome these challenges.

 

[SoulReflection]

Wishing you the best OP. I was just diagnosed with diffuse idiopathic skeletal hyperostosis (DISH). So, I'm in chronic pain always. NSAIDs do help a little but for me, but they're not a miracle drug. I'm currently going through PT and doing exercises at home. I'm also trying to change my diet and lose some more weight. Hopefully, that will lesson the symptoms. But as a 50-year-old, I can't imagine living like this for another 20-25 years--if I even last that long.

Well, that explains a few things. I hope your medical condition improves.

 

[Lostgallifreyan]

As is the case for most things, we have to weigh the pros and cons in our medical decisions. There will always be a tradeoff between joint pain and swelling, which is very damaging in it's own right, against the other long term impacts, known or otherwise. It certainly seems that we haven't evolved to process the barrage of medications we find ourselves considering, for an increasing number of afflictions. I hope we, as a species will find a way to overcome these challenges.

I do too. I think there's a reason that true renewal needs death and birth. I often think of that as I play when pain sets in, but I pace things to make the most of my time (maybe with dubious success).

I quit running, because I want to be able to get my food in on foot (using a sacktruck to do it in bulk), to live as long as possible without troubling anyone else to do it for me. I have enough great memories of running, the feeling, the views, doing it under night skies trying to name the planets I knew could not be stars in otherwise familiar views. Those small moments are often the biggest I have ever had, so I don't regret not being able. I'd have regretted not having it and making the most of it when I did have it, because that gets me the memories that get me though not having it. I hope that made some sense..

I'm taking a day off from the bass to lose some pain in my little finger on the fretting hand, and to make sure I keep it mobile. I think tomorrow I'll be able to put it to some musical purposes.

 

[Knavery]

Well, that explains a few things. I hope your medical condition improves.

What does that explain?

 

[definenredefine]

Nonsteroidals have important toxicities and need to be monitored with occasional bloodwork in my opinion, at least when taking on a daily basis. But there are quite a few of them now, some of which are designed to be easier on the gastrointestinal tract.

What's your opinion on topical NSAIDs, eg diclofenac, for osteoarthritis? Should they only be used for muscular pain?

Paracetamol is not good for the liver, so if you ever need it to be regular, go with DrThumpenstein's advice and get some checkup that lets you know if you're safe to use it more than a minimal and occasional use.

Pharmacist (or chemist, if you like) here. Paracetamol is bad for your liver if you take too much (meaning more than 3-4 grams in 24 hours). We regularly give trauma patients scheduled (as opposed to as needed) paracetamol in order to limit use of opioids. No liver issues that I'm aware of.

The reason is that too much paracetamol within 24 hours overwhelms your liver's normal metabolic pathway. Metabolism is therefore shifted to an alternate pathway that produces a toxic by-product, which in turn causes severe (often fatal) liver injury.

If you take less than 3-4 grams of paracetamol (acetaminophen in the US) per day, you should be fine. That said, I usually don't advocate for chronic use of any OTC pain med unless absolutely necessary.

I was told that food sources of purines were a thing to watch, but I love marmite and never got pain after it, but oranges were a different matter.

This is more for folks who suffer from gout, though, in as much as a major source of purines is red meat, it's probably not bad advice overall.

 

[Lostgallifreyan]

Pharmacist (or chemist, if you like) here. Paracetamol is bad for your liver if you take too much (meaning more than 3-4 grams in 24 hours). We regularly give trauma patients scheduled (as opposed to as needed) paracetamol in order to limit use of opioids. No liver issues that I'm aware of.

Hi, I should have mentioned why I biased to that much caution.. I had hepatitis C when I was 18, and while my immune system cleared the virus within weeks, antibodies remain. Doctors so often told me that this meant there wasn't any certainty that some remaining virus might not remain somewhere, and also warned that I may have some liver trouble after a few decades even if it had been entirely cleared early. Given that so many other things can cause cirrhosis or fatty liver deposits, I decided to be cautious in dosing, far more so than the guidance on the packet. If we can get by with less, I think it's worth doing on general principle. Not that I'm advocating homoeopathy here.

 

[Ric5]

take Collagen ... It can help rebuild joint Damage

 

[DrThumpenstein]

What's your opinion on topical NSAIDs, eg diclofenac, for osteoarthritis? Should they only be used for muscular pain?


Pharmacist (or chemist, if you like) here. Paracetamol is bad for your liver if you take too much (meaning more than 3-4 grams in 24 hours). We regularly give trauma patients scheduled (as opposed to as needed) paracetamol in order to limit use of opioids. No liver issues that I'm aware of.

The reason is that too much paracetamol within 24 hours overwhelms your liver's normal metabolic pathway. Metabolism is therefore shifted to an alternate pathway that produces a toxic by-product, which in turn causes severe (often fatal) liver injury.

If you take less than 3-4 grams of paracetamol (acetaminophen in the US) per day, you should be fine. That said, I usually don't advocate for chronic use of any OTC pain med unless absolutely necessary.


This is more for folks who suffer from gout, though, in as much as a major source of purines is red meat, it's probably not bad advice overall.

Thanks for your comments. Topical NSAIDs can definitely reduce pain and have fewer adverse effects than oral NSAIDs. There are placebo-controlled, double-blind, randomized studies showing topical diclofenac provides equivalent pain relief compared to oral diclofenac in treatment of osteoarthritis of the knee and hands, with significantly fewer adverse events in the topical groups.

But topicals are not without risk, and gastrointestinal bleeding has been observed in users of topicals, albeit at a much lower frequency compared to oral NSAIDs when used daily. They are a legitimate therapy for those who respond to them and tolerate them. I had patients who could not tolerate them, although they were certainly the exception, and most people tolerate them well. Topicals become unwieldy when dealing with the spine or widespread, multiple-joint arthritis. And they can be expensive in the US.

 

[Lostgallifreyan]

take Collagen ... It can help rebuild joint Damage

That may well be true, though I get it from roast chicken. I suspect our bodies don't break things down to atoms if they can re-use more elaborate molecular constructions when they get them. Breaking down to atoms only to build up again is inefficient, and I suspect a few billion years have optimised efficiencies like that when building cells from available materials.

Another bit of speculation: I have wondered if ibuprofen mobilises collagen. This notion arose when I learned that using it before running in the past might mask pain but later I'd feel worse after using it this way. If I took it at nights after running, before sleep, it was far more effective, maybe implying that part of its action might include helping the body to reorganise materials at the site of inflammation, thus making it more effective if allowed to do so during times of rest.

DISCLAIMER: THAT WAS NOT ADVICE!
I just thought it might be interesting to see if two resident medics here might have some insight about it. This is something I've not talked about to a doctor before (on the basis that their time is more important than my ideas).

 

[Tom Bomb]

Another avenue perhaps to explore,

While further studies are to be conducted, many studies comparing CBD with other typical pain medications tend to [see] CBD [as] superior. For example, Capano et al. (2019) found over half of the chronic pain patients (53%) in the study reduced or eliminated their opioid use within eight weeks after adding CBD-rich hemp extract to their regimens. Therefore, it is suggested that CBD could significantly reduce opioid use and improve chronic pain and sleep quality among patients who are currently using opioids for pain management.
[emphasis added]
Efficacy of CBD for chronic pain & joint disease | Arthritis NSW
…

Medical Marijuana and CBD for Arthritis Pain: Can Cannabis Help?

Anecdotally, yes. And the science is looking pretty solid. Not ideal, no, but perhaps a fair sight better than many of the other interventions at hand. If you enjoy a punt, it'd be a pretty good bet that this avenue shows a good deal of promise. May there be some relief in sight, for all those who are suffering.
​

 

[Old Garage-Bander]

take Collagen ... It can help rebuild joint Damage

Once a joint is damaged it cannot be rebuilt, at least not by swallowing an over the counter supplement.
Knees and hips can be replaced. Shoulders and elbows can be helped with surgical procedures. However once you get to smaller joints like fingers or wrists there isn't a lot to be done.

Collagen might offer some form of relief, to some people, with certain types of arthritis. My understanding of collagen is that it aids in providing some of the basic building blocks needed in healing. But doesn't directly heal by itself. If your body does not produce enough of it's own Collagen, then a supplement may help. And if you aren't producing enough Collagen on your own, you may have bigger problems. Joint damage from arthritis usually involves deforming the joint. Once it is deformed, reverting back to normal is pretty tough.

Many supplements can interfere with the effectiveness of prescription medications. For the average Joe Blow to try and sort this out, it can be a real chore. This is why you're doctor needs to know about everything you take, not just the Rx stuff. Often people take supplements believing they can avoid Rx meds. If that's the case fine. But supplements can have side affects too.

Please, in the future, refrain from making blanket statements that imply miracle cures. Rather suggest that it helped you in your situation, and may be worth other's looking into it by initially talking to their doctor about it.

 

[Ric5]

Once a joint is damaged it cannot be rebuilt, at least not by swallowing an over the counter supplement.
Knees and hips can be replaced. Shoulders and elbows can be helped with surgical procedures. However once you get to smaller joints like fingers or wrists there isn't a lot to be done.

Collagen might offer some form of relief, to some people, with certain types of arthritis. My understanding of collagen is that it aids in providing some of the basic building blocks needed in healing. But doesn't directly heal by itself. If your body does not produce enough of it's own Collagen, then a supplement may help. And if you aren't producing enough Collagen on your own, you may have bigger problems. Joint damage from arthritis usually involves deforming the joint. Once it is deformed, reverting back to normal is pretty tough.

Many supplements can interfere with the effectiveness of prescription medications. For the average Joe Blow to try and sort this out, it can be a real chore. This is why you're doctor needs to know about everything you take, not just the Rx stuff. Often people take supplements believing they can avoid Rx meds. If that's the case fine. But supplements can have side affects too.

Please, in the future, refrain from making blanket statements that imply miracle cures. Rather suggest that it helped you in your situation, and may be worth other's looking into it by initially talking to their doctor about it.

Excuse me ... But I rebuilt my joints with glucosamine and collagen and other supplements ... so why don't you refrain from making from making blanket statements. I go to a rheumatologist, he is a drug dealer. He has never healed anybody, he treats symptoms. I reduced my symptoms by 90% and reduced my medication by 90% by diet and supplements. And yes sorting this out was a real chore, but I did it and others can too. I am not crippled, and I have no artificial joints.

 

[Lostgallifreyan]

Just to pour some oil on potentially turbulent water...
Some rebuilding of bone can work, in contexts not expected. Whether this will ever be guided in ways to restore joint deformity in arthritis is moot, but the fact that deformity even exists in such damaged joints proves the bone does, itself, grow!

At the risk of veering off-topic, I want to describe a dental repair. The dentist found a deep abscess whose nature and location had defied years of looking, even with X-rays, because there were two sources of pain so no localisation was possible. Eventually it became bad to the point where strong pain enabled localisation, then a new X-ray confirmed it and root canal surgery fixed it, but not without three pins in its roots to hold it together and a link to the molar in front to help get enough secure base for a new crown, because a lot of erosion of the jawbone had already occurred, it was basically a hole, despite healthy gum above it.

The dentist hoped it would work out but told me to be wary because it might not have held. It did, and I told him at the time that if I was careful it might last long enough to get support from regrowth of the bone, and last much longer.

It did hold, and while a different but nearby crown needs renewal, he took an X-ray of the teeth on that side of the jaw last week, and it shows the growth of new bone around the base of the original tooth that failed. The density is still slightly less than the original bone, but it's good. He was a lot more surprised than I was, and he's a trained professional. At this latest appointment, as explanation of why I was not surprised, I said that if we don't get new teeth after the milk teeth are replaced, there has to be some sort of renewal to keep us going for a lifetime. Healthy gums will keep a tooth in place, but I figured that the jawbone must also be capable of healing the major bone structure if infection is first cleared.

If this can surprise a medical professional (and X-rays do not lie), then it suggests that some form of therapy may be devised to guide the growth of bone in a repair of arthritis. I won't speculate what that might be though, because I can't imagine it being easy or anything but invasive to apply with any methods I've ever heard of.

 

[DrThumpenstein]

Once a joint is damaged it cannot be rebuilt, at least not by swallowing an over the counter supplement.
Knees and hips can be replaced. Shoulders and elbows can be helped with surgical procedures. However once you get to smaller joints like fingers or wrists there isn't a lot to be done.

Collagen might offer some form of relief, to some people, with certain types of arthritis. My understanding of collagen is that it aids in providing some of the basic building blocks needed in healing. But doesn't directly heal by itself. If your body does not produce enough of it's own Collagen, then a supplement may help. And if you aren't producing enough Collagen on your own, you may have bigger problems. Joint damage from arthritis usually involves deforming the joint. Once it is deformed, reverting back to normal is pretty tough.

Many supplements can interfere with the effectiveness of prescription medications. For the average Joe Blow to try and sort this out, it can be a real chore. This is why you're doctor needs to know about everything you take, not just the Rx stuff. Often people take supplements believing they can avoid Rx meds. If that's the case fine. But supplements can have side affects too.

Please, in the future, refrain from making blanket statements that imply miracle cures. Rather suggest that it helped you in your situation, and may be worth other's looking into it by initially talking to their doctor about it.

Collagen has shown mixed evidence for treatment of symptoms but there is zero evidence that it restores or regenerates damaged joints, and this is still the Holy Grail that we seek in arthritis research. A meta-analysis published in 2019 of some of the better designed studies looking at collagen for treating osteoarthritis symptoms showed a modest reduction in pain and overall arthritis function scores compared to placebo. Collagen is generally well tolerated.

We’re still not at a point where we have reliable therapies to slow the progression of osteoarthritis, much less restore damaged joints. We’ve seen improved outcomes for joint replacement, but this is available only for a few joints and still rather dicey for joints the hands. I have personally benefited from knee replacement. I’d be ok with getting a hip replacement if needed. I’d have to think long and hard before signing up for a shoulder though, and pretty much a hard no for any other joint replacement surgery today. But this technology continues to improve and mature, and I’m fairly confident that progress will continue over the upcoming decades. Medical progress is unfortunately slow.

 

[Old Garage-Bander]

Excuse me ... But I rebuilt my joints with glucosamine and collagen and other supplements ... so why don't you refrain from making from making blanket statements. I go to a rheumatologist, he is a drug dealer. He has never healed anybody, he treats symptoms. I reduced my symptoms by 90% and reduced my medication by 90% by diet and supplements. And yes sorting this out was a real chore, but I did it and others can too. I am not crippled, and I have no artificial joints.

Well I'm glad for you. And say well done for putting in the hard work to manage your disease the way you did. Unfortunately, not everyone is as capable or diligent as you.

I fired my first Rheumatologist. When he diagnosed me at age 25, he said, with absolute certainty, that I'd be in a wheelchair by age 30. Well I wasn't having any of THAT attitude. I got hooked up with a guy who did everything he could to keep me as active as possible. And at 70, I'm still not in a wheelchair, not even close.
So yeah! There are good doctors and some not so good. Someone had to finish in the bottom half of the class, right?

 

[Ric5]

How someone treats disease is a very personal choice. Yhere are several options,

Well I'm glad for you. And say well done for putting in the hard work to manage your disease the way you did. Unfortunately, not everyone is as capable or diligent as you.

I fired my first Rheumatologist. When he diagnosed me at age 25, he said, with absolute certainty, that I'd be in a wheelchair by age 30. Well I wasn't having any of THAT attitude. I got hooked up with a guy who did everything he could to keep me as active as possible. And at 70, I'm still not in a wheelchair, not even close.
So yeah! There are good doctors and some not so good. Someone had to finish in the bottom half of the class, right?

I have been fighting Arthritis for 25 years ... pretty much winning these days ... I have RA OA, and tendonitis ...

I have seen several doctors, and several naturopaths ... these days I pretty much manage it myself with diet and supplements. Food can either be medicine or poison. I fight for my health like my life depends on it.

 

[DrThumpenstein]

Well I'm glad for you. And say well done for putting in the hard work to manage your disease the way you did. Unfortunately, not everyone is as capable or diligent as you.

I fired my first Rheumatologist. When he diagnosed me at age 25, he said, with absolute certainty, that I'd be in a wheelchair by age 30. Well I wasn't having any of THAT attitude. I got hooked up with a guy who did everything he could to keep me as active as possible. And at 70, I'm still not in a wheelchair, not even close.
So yeah! There are good doctors and some not so good. Someone had to finish in the bottom half of the class, right?

In addition to the OP, a couple of posts in this thread are good reminders that second opinions are an unfortunate necessity sometimes, in medicine like anything else. I’m glad you had the courage to challenge that prognosis and impressed that you’re going strong after lapping his dismal prediction!

Your post is also a great reminder of the value of physical activity in arthritis management. It’s hard work to restore joint function, and sometimes it isn’t possible. Much better and easier to maintain function. Physical activity and physical therapy are very useful tools in any arthritis treatment plan. I always felt that helping people move was at the core of my practice, and physical therapy one of my most effective interventions.

Thanks for your perspective, it’s inspiring!

 

[TyBo]

How someone treats disease is a very personal choice. Yhere are several options,


I have been fighting Arthritis for 25 years ... pretty much winning these days ... I have RA OA, and tendonitis ...

I have seen several doctors, and several naturopaths ... these days I pretty much manage it myself with diet and supplements. Food can either be medicine or poison. I fight for my health like my life depends on it.

"Let food be thy medicine and medicine be thy food." - Hippocrates

I like that thought, and I follow that myself, with results that even impress my doctors. I also very much listen to them, as I have some issues that food alone won't cover. Two pronged approach, works for me!

 

[TyBo]

In addition to the OP, a couple of posts in this thread are good reminders that second opinions are an unfortunate necessity sometimes, in medicine like anything else. I’m glad you had the courage to challenge that prognosis and impressed that you’re going strong after lapping his dismal prediction!

Your post is also a great reminder of the value of physical activity in arthritis management. It’s hard work to restore joint function, and sometimes it isn’t possible. Much better and easier to maintain function. Physical activity and physical therapy are very useful tools in any arthritis treatment plan. I always felt that helping people move was at the core of my practice, and physical therapy one of my most effective interventions.

Thanks for your perspective, it’s inspiring!

So very true, even as a general statement. Gotta move! It's a huge health factor.