Are we allowed to talk about Cures for Rheumatoid art... - NRAS

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Are we allowed to talk about Cures for Rheumatoid arthritis?

LondonArcher profile image
23 Replies

I started to develop joint pains approx 2.5 years ago, I'm in my 30's and thought my life was over, but eventually picked myself up and went about looking for more then a treatment, and instead looked for a cure. Best treatment I found was the Herb Cats Claw, but when I stopped taking it the pains came back. I noticed loads of posts back and forth about treatments but zero postings I've seen so far on the cure. i.e. something you take for a limited amount of time and then you no longer have to take it.

A lot of people seem to be looking towards the big drug companies for a cure .. my question would be why would any huge company want to cure Rheumatoid arthritis once (and lose out on Billions), when they can have millions of customers around the world paying them money for life for their treatments. There's no money in curing people, only in treating. IF they did develop a cure, what makes anyone think they'd let you know about it and lose out on billions?

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23 Replies
earthwitch profile image
earthwitch

I don't think RA research is that far advanced yet that there is a definite "cure". In the meantime, controlling the disease is the best that can happen, and may, in some people trigger a remission which is about as close as you can get to a cure.

I'm not sure if you were implying that the herb cat's claw was better than prescribed medicine, but the way you have described it, it is exactly the same thing - you flare again when you stop taking it, therefore not a "cure". The disadvantage of herbal medicines is that there has been no testing to define what the appropriate dose levels are, no standardisation of pill doses, whether the positive effects are repeated across a large number of people, or what and how serious the potential negative effects are. In contrast, there is an enormous amount known about every prescribable medicine. Its also very difficult to find out what effect herbal medicines will have on any other medication you are taking, and some can cause extremely serious interactions with other meds.

But, the fact is that a lot of people do find relief from herbal meds. As long as you let your doctors know exactly what additional herbals or supplements you are taking (so they can alert you to any potential dangers they know about), its your choice.

LondonArcher profile image
LondonArcher in reply to earthwitch

One thing I happen to be an expert in is Patents.

Patents are the right to invent something and then for 20 years you have a worldwide monopoly on that invention. One day I decided to find out what are the most valuable patents in the world - turns out all the top earning patents in the world are medical drugs. The top one has earned over $120 Billion over 20 years (a drug to lower cholesterol) .

Now there's one very interesting thing about Patents .. you're not allowed to patent anything natural like herbs, so once you find a herb that works for any condition, anyone in the world is allowed by law to copy whatever you have, unlike a patented drug which gives the drug company a 20 year monopoly.

The studies you talk about are usually paid for by the big drug companies, not by independent 3rd parties. The drug companies have a huge financial incentive to pay for such studies in order to get their drugs approved. But no real incentive to pay for studies into herbs.

Herbs such as Cats Claw have been used by the people of Peru for thousands of years, whereas most drugs a tiny fraction of that time.

Based purely on simple mathematics ... the amount you could earn providing drugs for life vs a one time cure is huge.

My question still remains .. If a cure exists .. what incentive is there for any drug company to tell us about it?

funkyfran profile image
funkyfran in reply to LondonArcher

Agree with you 100%, LondonArcher! Vested interests rule ok. As a Londoner myself (stuck in East Kent at mo, still awaiting rescue) I miss the variety of treatments available there. I am attending the Homeopathic Hospital there in January as I appreciate the approach (very patient with daughter) as well as the treatment offered. I shall be googling Cat's Claw asap....thanks for info....any more gratefully received.

in reply to funkyfran

Homeopathy fascinates me. There is no substance left in the water, just a memory of the substance, and you have to hit the container a certain number of times for it to work. I find it sounds like witchcraft. But hey, if it works for you, that's great.

funkyfran profile image
funkyfran in reply to

Wouldn't say no to a spell or two! Seriously, haven't tried it yet but keeping a very open mind. A really innocuous treatment methinks....not scary at all. Now childbirth ....gimme the meds!

funkyfran profile image
funkyfran in reply to earthwitch

I don't have such a rosy view of the medical profession that I think they know everything about all medications or indeed would tell you anyway! I was told that methotrexate was the 'gold standard' for RA (the cynical me thought 'must be the cheapest then') & when I mentioned 'alternative' treatments was treated with derision. Funnily enough, at a public meeting with NRAS reps present the specialist nurse changed her tune & mentioned Omega 3, Vitamin D etc. This was the same nurse that threw up her hands in horror when I refused a flu jab. Copybook well & truly blotted!

LondonArcher profile image
LondonArcher in reply to funkyfran

a younger relative of mine recently qualified as a Doctor - I've been keeping a close eye on him and ask him all sorts of medical questions over the last 3 years ... to be totally frank I'm less then impressed with the responses I get from him .. he's even said himself I seem to know more about healing people then he was ever taught in medical school. What he was taught is how to diagnose a condition and what prescription to write for it. Doctors use the word "Treat" a lot but rarely the word "Cure" ... he wanted to become a dentist but the competition to get into dentistry school was far higher then to become a doctor.

oldtimer profile image
oldtimer

Unless the research that is going on at present can find out exactly what triggers the auto-immune attack on our joints (and other tissues) then the possibility of finding a cure for RA is vanishingly small that it would happen by chance by looking at drug medications. Many of the newer conventional treatments are aimed at specific parts of the auto-immune response, but they are still blunderbuss treatments, which only work (when they work at all) while they are being used.

It seems to me that the treatments are, at our present level of knowledge, just keeping the immune response damped down, while we hope that it will spontaneously remit.I don't think that we can ascribe a sinister conspiracy theory to that.

Herbal, or other alternative treatments are in exactly the same category (but less well tested and regulated) as you yourself are acknowledging.

SpaghettiIsGood profile image
SpaghettiIsGood in reply to oldtimer

Here's some research on what may trigger r.a.

theconversation.com/newly-d...

dbestdeb profile image
dbestdeb

Your post made me laugh because never once in the year I've had RA have I ever thought of a cure. I guess I was so busy trying to deal with the reality of the disease, that the one detail of a cure, slipped right by. I have never heard of cats claw here in the US. Does it go by any other names and have any side effects? Thank you for redirecting my thoughts! Deb

LondonArcher profile image
LondonArcher in reply to dbestdeb

Cats Claw is also known as Uncaria tomentosa - am I allowed to recommend the brand I use? I have no idea how this forum works or is controlled.

You can find a ton of videos on it on YouTube, I'm more then happy to provide the links - I'm just new to this forum and not got a clue what the rules are on posting external links, brand names, etc

Victoria-NRAS profile image
Victoria-NRASPartnerModeratorNRAS in reply to LondonArcher

Hi LondonArcher

Welcome to the site. To answer your question about brand names, I would suggest not necessarily 'recommending' products, as some will work better for one person than another, but you are welcome to share personal experience, so no harm in saying which product you use and that you find it helpful.

For a bit more information on using this site, see the community guidelines and terms of use pages:

support.healthunlocked.com/...

healthunlocked.com/#policie...

(There are also links to these on the footer at the bottom of the web page).

Kind regards

Victoria

(NRAS Helpline)

Victoria-NRAS profile image
Victoria-NRASPartnerModeratorNRAS

Hi LondonArcher

You raise an interesting point. You certainly can talk about cures, but at the moment sadly there is no evidence for a cure having been found for RA, though there is research into this area, and as Oldtimer said, a lot of research is going into trying to gain an understanding of why people get RA in the first place, so that there is a chance of 'switching off' that process once its started, or potentially preventing people from developing it in the first place.

I understand your concerns about the money involved in medication, and think that's a valid concern, but there could still be good reason for it to be in the interests of a pharma company to develop a cure. For example:

- if a drug company found a cure for RA, it might not work for all RA patients, as the disease is very varible, so it would not necessarily mean the end of all other treatments.

- The first drug company to find a cure for RA then as you say, this would be a one-off treatment, rather than a longer, potentially more expensive course. Having said that, if the cure were to be tried out on current and future RA patients, they would be treating a hugely greater number of patients. It would then be in the interest of rival companies to come up with a cheaper or more effective cure.

- As you said, herbal treatments are not subject to patents in the way that medications are. They are also not required to go through the stringent trials that drugs do, which can be very costly, especially as not all drugs will end up being approved.

- Some of the profit that comes from medications currently used does then go into research for other products.

There is a real difficulty with finding good evidence for complementary therapies, because as you said, few studies are done on supplements and some of the websites claiming their effectiveness have a vested interest, as they often also sell the products.

Arthritis Research UK did a very good report on complementary therapies, and if you have not seen this, it may be of interest to you. Cat's Claw was included in the report. Unfortunately there was only one study to go on in RA, but it did show signs of improvement in symptoms. Unfortunately, number of tender and swollen joints did not seem to differ between those on cat's claw and the placebo group, and this is one of the strong ways of determining level of disease activity. It seems that there is a lot more evidence for complementary therapies controlling symptoms than addressing the progression of the disease.

Here is a link to the report:

arthritisresearchuk.org/art...

Kind regards

Victoria

(NRAS Helpline)

Tessthomy profile image
Tessthomy in reply to Victoria-NRAS

GOOD NEWS

bbc.co.uk/news/health-25498840 newest upto date news...Sara. X

in reply to Victoria-NRAS

Hi Victoria,

I’d like to thank you for your open, honest and balanced reply - nice to see from a Moderator.

I see many people on this site who are using biologics, some of which are better than the traditional DMARDS. In Australia, we can only access a biologic if we’ve failed ALL of the “old” DMARDS - as people here would know, that can take quite a period of time. This is due to the cost of the medication, as we have a subsidised medicine schedule, similar to (I believe) the UK. I don’t think the actual cost of using those DMARDS reflects the potential costs to patients (Health, income, lifestyle etc), which don’t get factored into that equation, but that’s our problem to battle.

I do believe that eventually we are going to get a lot of cures, for many illnesses, from bioceuticals. The question is, how to get these to market, without them getting snaffled up be the big Pharma companies, that then charge stupid amounts of money for them, thereby, limiting access to only those who have the money? We can’t even get an auto-inject version of MTX on the subsidised schedule in Australia.

I shall now go and research “cat’s claw” :)

If anyone is curious about cat's claw, there is an article about it here: nccam.nih.gov/health/catclaw

Kath

helixhelix profile image
helixhelix

Having several scientists among my friends I am a lot more optimistic than you about the future for people with diseases like ours. There is a huge amount of work going on since the human genome was unravelled which is fundamental to getting a better understanding of auto immune conditions, and there are a huge number of researchers whose motivation is better knowledge not just profit. One of the most amazing things to me about humans is the endless thirst for knowledge. Sure big businesses are about profit, as that's the nature of a capitalist society, but it's real people who work in them. And real people do wonderful things, and if they didn't we probably all still be living in caves and having a life span of 30 years.

So please don't be too cynical about research scientists. These people are not trained In the same way doctors are, so I don't think one newly qualified doctor would be much of a comparison. And with a better understanding of the disease then there's a greater chance for either a cure, or even better, something that will stop RA being triggered in the first place. And then, whether the substance that works come from a plant or not is fairly immaterial to me. After all a lot of supposedly natural substances are pretty toxic, and people have been earning money off drugs sourced from plants for years (such as all the digitoxin drugs).

The other thing to bear in mind is that many of the drugs used for RA weren't developed for this purpose, but for other things - such as hydroxychloroquine which was originally just an anti-malarial. So who knows how a cure could be discovered.

I hope cats claw carries on working for you, but I know what works for me so I'll stick with what I have. And you're young enough that maybe there will be something better for you in time.Polly.

SpaghettiIsGood profile image
SpaghettiIsGood in reply to helixhelix

Written as a metaphor, I think science is the sheep and pharma is the wolf in sheep's clothing.

Scientific medical research started out good, until it got bigger. They then had to separate scientific research from pharmaceutical manufacturing. When the manufacturing department saw that the research department was about to diminish their livelihood, it took steps to stop the research department. (And it goes on to this day). The manufacturing department would be out of business after manufacturing the cure. That's my theory anyway.

Plant cures have been quenched by pharma. They're just as effective. Man-made candy mimics the natural version of dates and fruits. Pasta mimics squash. It's a way to make money.

SpaghettiIsGood profile image
SpaghettiIsGood

Here's a cure still in development:. Experimental vaccine a major breakthrough for rheumatoid ... drugtargetreview.com/news/9...

And I think you're right about big pharma making trillions on treatments, not cures which would heal us cash cows and stop the money. I even heard a cure for cancer was blocked for this reason. In the u.s., the pharmaceutical lobbyists are the strongest group trying to influence lawmakers, which makes sense since that industry is making the most money. Your post said it all. It's up to the individual to do the work and look into r.a. to try to help themselves.

SpaghettiIsGood profile image
SpaghettiIsGood

I'd like to add that since mtx is the gold standard for r.a. treatment, that must mean that it helps a majority of the people taking it. I'm making this comment in response to a statement made in this thread.

Jackie1947 profile image
Jackie1947

There is no 'cure' . Aren't you rather cynical or have you an agenda and do you actually have RA?

Jackie1947 profile image
Jackie1947

9 years ago !

SpaghettiIsGood profile image
SpaghettiIsGood

I just posted the latest research about a cure in progress.

I know, 9 years ago, but it was in the list at the top. Someone must have posted to it recently.

It's still as valid today as it was 9 years ago, and yes, I have r.a.

Everyone's entitled to their opinion.

I'm just a sheep bleating out in the wilderness with no agenda. I bleat what I see.

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