An american doctor has written about RA.
Scary Reading: An american doctor has written about RA... - NRAS
Scary Reading
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abannister
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39 Replies
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Hi there, I haven't read every word of this one - but I'm a bit sceptical about articles that use old data or non referenced data to persuade. And doctors that use scare tactics are just mean - we have enough to cope with without have people trying to frighten us even more! Having said that minocycline is an antibiotic that is used, more in US than UK. There was an article about it on NRAS website too, but I can't find it at the moment of course! Roadback.org has the history I think. So don't get too alarmed, as prognosis these days is much better for most. Pollyx
• in reply tohelixhelix
So I might have a little longer left then? Just wondering whether it was worth renewing my library books.
I knew i should blame my mother!! Emotional trauma at 5 or 6 year old, yes, she wouldn't let me have a pony!!! Axx
i blame my late father, his dad had RA
What is your take on this please Mr Bannister? Do you know of any practitioners who use the Brown approach I wonder? I've been interested in this approach for a while and am maybe not as sceptical as Polly and Allanah but it has really got me at a bad time when I'm preparing to start injecting myself with MTX from tomorrow. I've been looking at the syringes full of honey coloured solution and feeling as if I'm entering the world of Train Spotting so hearing Mercola saying that our drugs are some of the most poisonous in the pharmacutical world is not welcome at all.
Having said that if I knew where to find a reputable Brown practitioner I'd be up for trying this method as an alternative because it's not just juicing and stuff at least - it still involves taking drugs - just far less aggressive ones. I can buy the early trauma thing even - having had all this horrible eczema from being a toddler that has now morphed into RA I'm sure psychology plays it's part in where I am now.
The downside of this Brown alternative last time I looked into it was the length of time it takes for these antibiotics to work compared to DMARDs and the worsening of symptoms prior to any success. I saw potential for joint destruction in the waiting period and replacing MTX for non rancid fish oil (was it creel?) didn't appeal much either - it's very dear you know?! The fact that I would have to pay through the nose to get a physician and either move to the mainland or spend tons on travelling to see some potential quack worried me too so I thought I'd blank it fast.
But you've woken that worry light up again for me unfortunately - but there you go - it was flashing a lot tonight anyway!
PS I wonder what RA Warrior says about the Brown approach since it's so prevalent in the States and everyone pays for their meds there anyway? I'll take a look now.
Didn't get far in my search for some balance but I did find this interesting article about Mercola;
chicagomag.com/Chicago-Maga...
And from RA Warrior I found this extract which cheered me up considerably!;
"My own methotrexate decision
Sometimes I think of methotrexate this way: in our war against Rheumatoid Arthritis, methotrexate cuts the enemy army down to a more manageable size. Methotrexate is a powerful weapon. I have used it because an RA warrior needs to use every weapon which proves useful.
Recently, I was questioned by someone I know who still sees the use of a chemotherapy drug for Rheumatoid Arthritis as heavy-handed. Obviously, this skeptic has not experienced severe Rheumatoid Arthritis first hand. I believe that he fails to understand the fundamental dangers that the disease itself presents.
When all is said and done, in my estimation, it is best to fight. And if the Rheumatoid Arthritis brings its strongest weapons, we should bring ours. Often, that includes methotrexate."
Tilda
sylvi• in reply to
I'm with you on this one. Any drugs that make this disease dampen down i will take it. If the brown method worked every dr in the world would use it,as they don't it makes you wonder if this is another quack remedy. SYlvi.xx
It's not necessarily the Brown approach that I'm sceptical about, as we well know this disease is amazingly variable so it does make sense to me that some less widely used treatments could well work for some people. What gets me riled is this alarmist approach to health issues, as I think that just preys on people's fears and is unnecessarily frightening. It's also hugely frustrating that there seems to be no middle ground between the classicly trained medics and the ones with a more holistic approach. It's as if you have to join one cult or other, and can't try to find solutions that draw on the best of both. Some of the things the Mercola's of this world propose may well be helpful, even if only for ameliorating the effects of strong drugs. Although reading how much money he's made does raise questions in my mind as to his motivations, and if he has such an enormous empire then may not be as thorough in working all these different things through. But always interesting to find out different views, and the more people who look for solutions the better.... Pollyx
Sceptical! Again! No I was merely making a joke(or so I thought) I did think that was funnee as I lived in a concrete jungle in G lasgow so that's why I never got the pony! Oh well back to comedy school A xx
Completely! Jokes every time. And I liked yours...so sceptical was directed at me, not you... Polly
Ha ha I found this so funny, because a pony is something my daughter always asked for, we didn’t have two halfpennies to rub together.
Hey Allanah keep 'em coming - we need jokes 100% more than we need Dr Mercola and his million dollar empire! Tilda xxx
There is an interesting article also in this months NRAS magazine section 28 called "if it looks too good to be true" which advises members about advertised or promoted treatments that are well respected or widely read, to get as much information as you can about products or treatments. "The international rheumatology community knows only too well that there is no evidence for any alternative therapy having any impact on the progression of RA so do check with your Rheumatology team or contact the Nras helpline. " They also mention Sense about Science launching a campaign called "ask for evidence" which Nras say they support.They also say there are some therapies that might make you feel better and say its always wise to check first.
For me evidence I would feel is evidenced based is from Nras and NICE guidelines. when they state a treatment is useful then I would follow that.
If the above paper we are discussing and a bannister is kind enough to share is of the standard required I am sure that it will be considered by NICE, and like everyone else hope that a cure is found sooner rather than later.
And the nras magazine is always a good read, Tilda is in this issue discussing telemedicine and it's really good.
Love Axx
After reading some of the comments here I'm a little reluctant to read the article. Mention of scare tactics in particular make alarm bells ring. For me 50% of my battle with ra is won through the use of drugs but the other 50% is won through maintaining a positive attitude. I try not to read papers which instill fear and make me doubt the effectiveness of the treatment which is available. If this is sticking my head in the sand then so be it. I'll make like an ostrich and do my best to maintain a healthy body and mind.
Paula x
• in reply to
I totally agree with you Paula - I'm sticking my head back into the sand with you now and promise I won't reveal a word Mercola utters to you. X
• in reply to
lol, thanks Tilda. I feel happiest with a head full of fluffy bunnies and rainbows 
Gina_K• in reply to
Totally agree with your approach Paula I'm an ostrich too, if that's what it takes. Information is power. I do think diet is important too
G
I tried to sign up to Mercola's much vaunted FREE!!!! online nutritional typing test. You have to wade thru' a lot of his verbiage to find the link, which seems to be his style. Then give email address, which I did. Then a whole load of other info is requested & when I saw that they were also trying to flog me some plan or other for pets' nutritional health I could no longer ignore that this is first & foremost a money-making scheme. The fellow's got fingers in too many pies to be convincing, he's casting his net far too wide to have in-depth knowledge about any one disease or treatment.
It would be nice though if the received wisdom re. RA treatment was questioned / challenged by people with real integrity & knowledge - anyone know of anything like that going on?
Christina xx
Tilda
When looking at those honey coloured syringes just remember that RA left uncontrolled is likely to do far more damage to your body than what, afterall, are just small amounts of MTX (even on the higher doses given for RA).
Just think in terms of entering the world of drugs and rock and roll and look forward to the great riffs!
Jude
Hi all
Some interesting issues raised here. Firstly, Polly, our minocycline article was recently taken off the website and archived, on the suggestion of the author, as minocycline is so rarely used for the treatment of RA in the UK now. So that explains why you couldn't find it!
As Allanah points out, with the use of the NICE guidelines, we can see that for rheumatoid arthritis it would not currently be recommended that anyone take natural products or make dietary changes in place of the standard medications used to treat this disease. This is because the standard medication acts by not only reducing the level of inflammation but also slowing down the progression of the disease, which currently other medicines and supplements and dietary changes alone have not been found to do. Therefore whilst there are complementary therapies and dietary changes that can offer symptomatic relief, for example products with natural anti- inflammatory qualities, and are certainly worth considering they are still not able to slow the disease and help to prevent erosive damage to the joints and other complications associated with the disease.
Thank you Allanah for signposting to our 'If it looks to good to be true..' article. We have recently uploaded this article to the website: nras.org.uk/about_rheumatoi...
I have included below the link to the 'Sense about Science' website as they have some very interesting publications and articles aiming to “make sense of science and evidence, provide quick help and advice, make a fuss about things that are wrong and represent the public interest in sound science”: senseaboutscience.org/
Having done a little further research into Dr Mercola we also found this interesting website – Quackwatch! quackwatch.com/11Ind/mercol...
Kind regards
Sarah Kate
NRAS
emmaf• in reply to
Hello Sarah Kate,
Thanks for your links - just wondered if you could send a link within the senseaboutscience site you mention that relates to arthritis as i can't find one but am very interested in it.
Also, I had a quick look through the Nice document again and see that their research surveys seems to relate to only a few years at most (they don't show the years they did them) and really doesn't seem to show any research evidence for longer periods. Do you think that it might be a good idea for NRAS to produce a document similiar to the lectures below - perhaps this might stop people looking for answers elsewhere in potentially dodgy areas if they have more faith in conventional medications?
Kind regards
Emma
Ha ha well I get enough great riffs up here and rock n roll come to that! But today's the day for honey coloured stuff (2.20pm) and ultimately the proof has to be in the pudding. I feel far, far healthier today overall than I have felt for decades. If I look back at various episodes of what i thought was RSI, back pain, widespread eczema - often infected - and my hugely overweight frame too I know I've a lot to thank honey coloured stuff and my medical team for so I'm not unduly anxious really.
I do everything else dr M favours re nutrition and exercise but as others have said the man spreads himself far too thin. He also seems to be riding on the late Dr Brown's theories and fusing them with his own branding which is too business like for me. I don't like the scary tactics he came in with at all and I don't want to be regurgitating fish oil forever more either!
TTx
Hello Sarah Kate,
I think that if people are to make informed decisions on standard medications and avoid potential pitfalls of unproven alternatives, they need easy access to the research statistics on the outcomes of patients over a long period of time using the standard medications.
These facts should speak for themselves. I am assuming that this information exists and also that these drugs are actually effective for the majority of patients in reducing the effects of the disease. As far as i can see, the Nice findings are pretty old (might be wrong but the paper i read quoted research done decades ago) and that most papers are too technical for the average person to decipher. I have not looked at the senseaboutscience link above which hopefully will prove me wrong. Simply, I would love to find out what state the average RA patient finds themselves in after a period of years (say 20 or 30 years - maybe since the 80's), what percentage coped okay, what percentage had crippling effects of the disease and include what percentage used the standard DMARDs. I imagine that it is too soon for the Biologics to be included but Methotrexate has been used since the 80's i understand.
The nearest i can find for this is this link to an American who uses research from small studies within Europe over the last few decades to make his points.
youtube.com/watch?v=djZfEi-...
It would be very useful if the NRAS or Arthritis Research made a similar lecture or an accessable document containg the research which i think would help ease peoples minds about using these drugs and not get panicked by 'great' claims by others.
Kind regards
Emma
I'm glad you posted Emma because I lost the link to this video which you put on here a while ago and I was unable to recall the title of the post or anything else beyond that you were called Emma - which wasn't that useful for my search!
I agree I found this to be one of the most informative of videos I've watched and it helps that he uses graphs and speaks slowly without waving his hands about or relying on scare tactics - and there's no marketing involved as far as I can ascertain. But as you say it is quite old now and it would be very useful to have the facts that he explains so well updated now as well as new supporting evidence used, especially relating to longer term users of DMARDs in relation to their disease activity and the amount of damage that has occurred. Tilda
Thank you Emma
That was very interesting lecture and made me feel so happy I got my RA recently and have done so much better with my treatments being given early and aggressively.
My great grandmother had severe Ra and died young in bed and with no intervention. My grandmother died at 35 after having ra and after being on bedrest with aspirin and in pain and nor real treatments. My dad died at 67yrs after RA and having gold injections and had deformities and it affected his heart. I have it and have the benefit of aggressive combinations of drugs and so far am starting to improve massively (with of course the one step back as i have neck problems now, but not thought to be due solely to RA)
So i am grateful to not have got ra when my descendants did and for all the help and support of everyone here too.
Ax
Goodness, with that family history I'm surprised you are so measured about having it yourself. Must be the soothing effect of Barry Manilow! Px
lolxxx And yeh I dont know if its good knowing what they went through or not, but as I say things have moved on so much I am lucky!! Axx
Sorry, but to me it just sounds like another person trying to sell his own ideas on treatment. I have seen so many of these, saying you can treat it by diet, by cutting out certain foods, by taking certain supplements. All I can say is that I have tried them all and nothing has made any difference to me.
Jo
And since foolishly sending 'Dr Mercola' my email address but not filling out the rest of form have received several of his missives. Last one entitled '97% of terminal cancer patients previously had this dental procedure!' Article goes on to say basically that if you've had root canal treatment you are going to die!!! Evil man. Evil consortium, more likely, suspect he's just a figurehead with a good complexion & gift of gab.
allanah• in reply to
ha ha i have had R~A in the family and two lots of root canal treatments. Can u make sure they play some Barry when I pop my clogs.(my tooth abscess has been much better since though!!) lol Axx
In reply to the section on Nice and there stats., the one that I read yesterday was 2010, it stated the Placebo effect came off worse in the trials rather than the ones on treatment. they were talking about Entercept and couple of other drugs ending in 'bub', but I was more interested in mine, Entercept.
Hi Tilda and Allanah,
I had just submitted a response but it has not materialised so am trying another response.
Am glad the lecture was useful, if you want to find it again, just go to Youtube and search under arthritis and it should appear. Here is part two of the lecture in case people find it useful. They may not agree with all he mentions but at least he is using research as a basis for his opinions. I wish there were more like these online.
Emma
youtube.com/watch?v=bjzMylQ...
Hi Emma,
glad you put the second part up, saved me searching for it!! for me it was very interesting of how some studies show enviromental risks as triggers for Ra and genetic factors rather than familial factors. I would be interested now to see the further studies since this video in 2008 and the progression from the scientists in their work.
But his vision of the future for RA sufferers was very positive especially when he talked about the numbers of people with RA declining, I hope that some day we will find that no one will get this horrid illness.
As with all studies though there will be another study that questions these finding and attempts to replicate the study to see if its valid and trustworthy so its great to keep reading the studies in the nras mag on what is going on under trials at the moment too. Thanks and hope you are keeping well at the moment. Axx
Hi Allanah,
Yes it is interesting but as you say, who knows if the doctor in the lecture is correct in his deductions. He might not be which is the reason why i would love to see a similiar lecture or document produced by the medical establisment here i.e by Arthritis Research or the NRAS who i would have faith in.
It seems to me (might be wrong) that all the trials mentioned by Nice cover just a few years but I would really like to see the results of studies over a much longer period of time. I would like to know what my chances are like in the years to come. Are the numbers declining the UK? I read that a third of people with RA give up their job - doesn't sound great to me. So ,going back to the point of Dr Mercola, without statistical information, i find it very hard to have faith in any medical approaches. Having said that, i am heartened by the amount of research being done plus the newer drugs so i have a kind of blind faith in the future.
All the best,
Emma
Hi, I read most if the article and most interested in the R A and/or Fibromyalgia. I believe I have both. Not that it makes much odds as RA is the one that needs the aggressive treatment. My methotryxate now up to 25 mgs per week with 6 days of folic acid. This seems to suit me. Worst thing is going to bed and within half an hour both feet SO hot that I cannot sleep. I'm just waffling now really - so night night, sleep tight.
Jan
Well this has turned out to be a great post, the things you learn from each other. some fantastic replies videos etc. it has got us all thinking. a good discussion works wonders
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