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-   -   Anyone manage RA without the drugs? (https://www.neurotalk.org/arthritis/220666-manage-ra-drugs.html)

caroline2 05-23-2015 02:34 PM

Anyone manage RA without the drugs?
 
I have 2 friends just dx'd in the last year or so, and my neighbor is now trying to manage RA without the drugs...she took some of them for about a year and she's trying to recover from all the side effects.

The other friend is combining both but would LOVE to not take the drugs. Her doc is now testing for Lyme and maybe it's not RA.

I deal with body wide OA for all my life since 18 and I'll be 77....hip replacement in 2010, left me with a big mess of complications. grrrrrr

I just found this group and lots of good information here....thanks

Auntie Audrey 06-02-2015 03:52 PM

I had a friend at work who eventually had to leave her position because of her RA. She was taking medications for it, but if she was having any side effects she never mentioned anything to me.

I do remember her saying she was also taking turmeric daily, and possibly also fish oil. I don’t know what dosages she may have been taking, nor am I recommending these supplements as I am not really familiar with RA and its treatment.

caroline2 06-02-2015 04:39 PM

Right now I'm talking to my neighbor who does not work a lot a all and money is a big issue in her life, lack of it. I don't know how she does it really. Recently, she said she had a flair due to stress of worry about money and pain was out of sight. She ended up taking low dose prednisone and felt better. If I could I'd buy her the supps she takes. She has no one to help her, a niece helps her a bit.

So many of these drugs can make things so much worse.

mrsD 06-02-2015 05:09 PM

Curcumin is showing great promise in helping those with inflammation. RA has significant inflammation of the lining (endothelial) of the blood vessels. Curcumin has been found to reduce this inflammation.

Here is a review article from 2011...
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3025067/

It mentions the need for better bioavailability which we now have OTC.
LongVida optimized curcumin is now being offered by many quality supplement manufacturers. (NOW brand is called
CurcuBrain).

caroline2 06-03-2015 11:59 AM

I'm getting close to ordering her some grape seed ex, she took some yrs back but had to stop due to money. I gave her a bottle of DGL for stomach protection and now thinking of ordering her some curcumin, grape seed ex and DGL from my source where one buys 1 gets 1 or 2 free depending on sales. I'm certainly not loaded but I "feel" for her situation.

kiwi33 06-06-2015 05:11 AM

Caroline2, the science in the curcumin link that mrsD provided looks good to me.

More pragmatically (you said that your neighbour does not have much money), curcumin is cheap and it could well help with her RA.

mrsD 06-06-2015 05:24 AM

Curcumin is not as "cheap" as you would think.

If one chooses turmeric it can be very cheap...but this form is not absorbed well. The studies were done with optimized (solubilized using liposomal technology) curcumin. So the results in those studies are very positive.

LongVida used to be $60+ dollars a month. But now that they have licensed out to other makers, it can be done for about 15 a month. The 400mg Curcubrain is on Amazon for $22.94/50... one needs only one a day of this type.

This is a very nice drop in price for quality. So price is not always a factor for some items. This is also true for the new water soluble CoQ-10's. The Q-gel and Qunol are very good improvements on this item which has terrible solubility in its original free form.

There are thousands of papers now on PubMed concerning curcumin... over 3000, last time I looked.

Synnove 06-10-2015 05:39 PM

Re. Tumeric
--I have both OA and RA and have been instructed to use Tumeric. I have been using an organic powder/spice form that I just sprinkle on my hard boiled eggs, avocado and tomato in the morning. Would this form be comparable to a tablet form?

mrsD 06-10-2015 05:43 PM

Quote:

Originally Posted by Synnove (Post 1147530)
Re. Tumeric
--I have both OA and RA and have been instructed to use Tumeric. I have been using an organic powder/spice form that I just sprinkle on my hard boiled eggs, avocado and tomato in the morning. Would this form be comparable to a tablet form?

The fat in the avocado may help absorption some....but tumeric that is "raw" and not solubilized somehow, is just not absorbed much. It will remain mostly in the GI tract and may provide some local anti-inflammatory actions there.

The studies that were done showing promise for body inflammation used specially optimized curcumin to enhance absorption thru the GI tract and into the blood stream.

caroline2 06-10-2015 05:48 PM

My thinking is sprinkles are not much in dose I have a swansons turmeric phytosome with meriva and each cap is 500mg, I take one per day for sure. Also have a weaker turmeric that is 720mg per cap and says 2 per day. both from swansons. I make soups at least once a week, and pour 2 caps of turmeric in my soup.

Synnove 06-15-2015 05:45 PM

.Re. Turmeric.
 
Thanks Mrs. D,
for your information and response.
I bought this product from WalMart: Spring Valley, Turmeric Curcumin. 500 mg. It comes in gel capsule. Facts,: Turmeric 500 mg (Curcuma longa) (root) Other ingredients: Gelatin,Contains < 2% of Silica, Vegetable, Magnesium Sterate.
__No: gluten Yeast, Wheat,Milk or milk derivatives,Lactose,Sugar,Perservatives,Soy,Artifi cial color, artificial flavor, Sodium,(less than 5 mg per serving.)

I want to ask you if this is an OK Turmeric supplement.
--Thank you

mrsD 06-15-2015 06:13 PM

This is not an optimized product.... it is probably just going to stay in your GI tract and be move out with the stool.

The active curcumin is not soluble in water environments... so one has to use an optimized produce like was used in the recent medical studies.

If you type in "optimized curcumin" you'll find those products.

I use CurcuBrain by NOW.... and it is working for me some. Not spectacularly yet, but then that will take time I think. I get mine at Amazon. I don't think many stores have the newer more soluble products yet.

caroline2 12-21-2015 12:06 AM

I've been taking MSM powder for a lot of years, heard about it from a person on the roadback group who deals with RA and he takes higher doses of MSM for pain reduction. I take most days 1 tsp three times per day in spring or distilled water. I can feel the pain leave my body as I drink it down.

My neighbor who has very limited funds now reluctantly is injecting with Orencia and pointed to her head where she is losing so much of her beautiful curly hair.

MSM has worked for me for a lot of years and I continue with it....when I start to hurt more I know it's time for a tsp of MSM.

My major issue is Osteoarthritis but recent blood work showed RA factor. C

caroline2 12-21-2015 01:16 PM

I intended to post this MSM link with the above, but forgot to.

http://www.webmd.com/arthritis/news/.../arthritis-msm

anon20160311 03-09-2016 03:26 PM

Rheumatoid arthritis doesn't happen to people because of a lack of turmeric or MSM powder in their diets. RA happens when genetically prone people ingest lectins.

The solution? ......Stop ingesting lectins, along with the carbohydrates which cause undigested foods to enter the bloodstream.

Lectins are extremely sticky proteins which the immune system can react to. Cartilage cells attract lectins from foods like wheat, beans and potatoes. The immune system recognizes the lectins as an infection. The immune system attacks the lectin molecules, and attacks the cartilage they cling to.

The old medical saw which says autoimmune diseases happen when the immune system attacks "self" tissue by mistaking it for "not-self" antigens is simply false. The immune system is far smarter than that. RA represents the immune system performing its job. RA sufferers are simply over-taxing their immune systems.

kiwi33 03-10-2016 12:21 AM

Veggienft, I am puzzled by your post.

RA is an autoimmune disease with a strong inflammatory component - that is why anti-inflammatory agents are often effective in management of it.

Lectins are proteins which bind oligosaccharides with high specificity - each lectin has a different specificity. Exogenous lectins (mainly found in plant foods) can have local effects in the GI tract if the plant food has not been adequately cooked. If the food has been cooked exogenous lectins will not have local effects and (in just the same way as any other protein) will be broken down into their amino acids by digestive enzymes. I don't know of any evidence that intact exogenous lectins can pass across the gut mucosal boundary and enter the blood stream, where they (potentially) might interact with immune system proteins - do you have evidence which suggests that this is the case?

There are also endogenous lectins, naturally made in the human body. Mannan-binding lectin is an example - it, and others, play important roles in the innate immune system.

"The old medical saw which says autoimmune diseases happen when the immune system attacks "self" tissue by mistaking it for "not-self" antigens is simply false."

This statement will come as a considerable surprise to people (like me) whose professional knowledge includes immunology.

Would you like to justify it, ideally with referenced data?

caroline2 03-10-2016 02:01 AM

I find the Lectin issue worth thinking about more. Way back about 20 yrs ago I purchased the blood type book by Dr. Peter D'Adamo...I'm a Type B and my type per D'Adamo's work says I should NOT eat chicken as chicken contains a blood Type B agglutinating lectin in its muscle tissue. For a good while after reading this I was staying away from chicken and eating more turkey, beef and lamb which are more beneficial for type B's. But I've fallen off this practice and have been eating more chicken in the last couple yrs. Now, I'm looking at this again, as my joints have been aching so much more in recent years. Could it be the chicken and the lectin?????

Here is more info on Lectin and a lot of comments from readers at the end.

http://www.marksdailyapple.com/lectins/#axzz42TlQSH8Q

Now my friend who is now challenged with RA has been and still is a big bread eater...she says she LOVES breads and won't give them up. I've brought this to her attention of the carb RA connection but she does not want to hear it. I've stopped
bringing breads into my house about 7 yrs ago. Now for me I guess I better stop bringing chicken into my house. Gotta read more of the book tomorrow. Thanks.

kiwi33 03-10-2016 08:45 AM

The ABO blood groups are complicated. There is good evidence that inheriting some combination of them can be a risk factor for some diseases - see http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3827391/ for a discussion of this.

"Could it be the chicken and the lectin?????"
I doubt it - chicken is a good source of protein and I don't know of any evidence that alleged chicken lectins can pass across the GI tract and lead to adverse health effects for people with the B blood group or any other for that matter.

"Dr. Peter D'Adamo"
In my opinion D'Adamo is not worth taking seriously - he promotes a fad diet. This link (and links therein) may help NT readers to draw their own conclusions about this; https://en.wikipedia.org/wiki/Blood_type_diet.

caroline2 03-10-2016 12:41 PM

Kiwi, there are plenty of people who follow the blood type way of life. I'm one who will look at everything that could help me with my health. I'm going to back off chicken for a while now. Going to do more research on lectins. My opinion is that D'Adamo has valid info. I like wiki for a lot of info but don't believe everything from them.

anon20160311 03-10-2016 03:59 PM

Quote:

Originally Posted by kiwi33 (Post 1203500)
Veggienft, I am puzzled by your post.

RA is an autoimmune disease with a strong inflammatory component - that is why anti-inflammatory agents are often effective in management of it.

Lectins are proteins which bind oligosaccharides with high specificity - each lectin has a different specificity. Exogenous lectins (mainly found in plant foods) can have local effects in the GI tract if the plant food has not been adequately cooked. If the food has been cooked exogenous lectins will not have local effects and (in just the same way as any other protein) will be broken down into their amino acids by digestive enzymes. I don't know of any evidence that intact exogenous lectins can pass across the gut mucosal boundary and enter the blood stream, where they (potentially) might interact with immune system proteins - do you have evidence which suggests that this is the case?

There are also endogenous lectins, naturally made in the human body. Mannan-binding lectin is an example - it, and others, play important roles in the innate immune system.

"The old medical saw which says autoimmune diseases happen when the immune system attacks "self" tissue by mistaking it for "not-self" antigens is simply false."

This statement will come as a considerable surprise to people (like me) whose professional knowledge includes immunology.

Would you like to justify it, ideally with referenced data?

Different lectins have different heat tolerances, "cooking" can mean many things concerning time, temperature, moisture, and the promulgation of heat to all molecules. Wheat germ agglutinin (WGA) is the lectin in wheat. WGA has a specific affinity for cartilage molecules, the tissue destroyed in rheumatoid arthritis. Glucosamine works to relieve arthritis because glucosamine contains the same molecule-end which cartilage uses to attract WGA. Glucosamine binds WGA which would otherwise be bound by cartilage.

However, a few points.....

1. Degree of specific affinity of any lectin for any tissue can vary with patient genetics, as can the propensity for autoimmune reaction.

2. The propensity of the small intestine to allow lectins such as WGA into the bloodstream, ie defeat of "tight junctions", is itself strongly influenced by lectins like WGA. WGA can act as its own vehicle for entering the bloodstream.

There are symptoms besides cartilage destruction which accompany arthritis. They include skin rash and swelling of the lower legs. These symptoms are less associated with the more-heat-sensitive WGA, but are more associated with less-heat-sensitive lectins like bean concavalin A and potato lectin.

Yes, cartilage destruction is preceded by inflammation. The inflammation is part of the autoimmune process. Inflammation-associated cytokines, usually led by TNF alpha, collect around the lectin attack. Leucocytes follow, and attack the compromised tissue.

I could not fail to notice that you challenged me to prove my case without providing any evidence for your case besides your internet-claimed background. Yes, I'm more than willing to concede that doctors and nurses get trained with the information you are attempting to impart. It's just wrong.

Suppose that the truth is uncertain? Why would you pipe up to say not to try eliminating lectins? "First, do no harm" does not mean, as medical practitioners tend to say "Instead, remove the patient's knee".

http://www.krispin.com/lectin.html

caroline2 03-10-2016 05:08 PM

Now this has me wondering since I've been eating more beans and ever and back to the chicken could these be the cause too of the rash on my foot which I can't get rid of...this foot has become quite arthritic and now the rash in the last 3 months or so. ummmmmm

Thanks very much for all this information. I'm familiar with Krispin via Weston Price.

kiwi33 03-10-2016 05:09 PM

"I could not fail to notice that you challenged me to prove my case without providing any evidence for your case besides your internet-claimed background."

I am a semiretired biomedical scientist. My colleagues and I have published more than 20 papers with an immunological focus, mainly concerned with innate immunity (the complement system).

"It's [the basis of autoimmune diseases] just wrong."

Do you have any evidence (links to PubMed would be nice) to support your opinion that it is "just wrong"?

Chemar 03-10-2016 05:24 PM

Hi folks
I am going to have to intervene here.
At NeuroTalk, we allow all views to be represented and we do not require anyone to provide credentials. It's always a help when things are backed up with research articles etc but not a requirement.

In fact, in the posting guidelines, all "professionals" are requested to hang their pro hat up at the door before entering!as this is primarily a community for patients and their caregivers, loved ones etc. and not for professionals.

We do also ask that members please disagree agreeably :) so I am hoping that is the tone this discussion will continue with.
Here are the posting guidelines http://neurotalk.psychcentral.com/showthread.php?t=1293
Thanks.

caroline2 03-10-2016 08:02 PM

The plot keeps getting thicker...I found this blog, To Bean or Not To Bean. With pros and cons to eating beans. I've been eating more beans than ever in the last two years or so and more aching joints than ever. Lectins!!!

http://www.jdmoyer.com/2011/02/15/to...-human-health/

So much dietary info out there today to weed thru and to consider for our own health, being aware of how our body feels when we eat certain foods.

kiwi33 03-10-2016 10:55 PM

Caroline, what kind of beans are you eating?

Some but not all beans are rich in exogenous lectins - while I doubt that they can enter your blood from your GI tract, potentially leading to systemic effects, if they are not denatured before eating the beans this can lead to unpleasant local GI tract symptoms.

It depends on the kind of bean but usually soaking them overnight and then cooking them well is sufficient to get rid of the exogenous lectins.

caroline2 03-11-2016 02:47 PM

Kiwi, I've been over dosing on all beans in the last 2-3 yrs as I see it now...so I'm going pretty cold turkey off beans and see if I'll feel better joint wise and in general. I make soups pretty often and beans have been a big addition in my soups....so I'll still make soups but eliminate beans....beans are so easy but maybe not that good for many of us.

I don't buy the dry beans, soak them, cook them etc...I buy most of my beans at whole foods and go with that way. Down the road I'll make a kidney bean/ground lamb chili, but not for a while.

lon1934 08-17-2019 06:10 PM

I Take No Drugs For My RA
 
I was dx'd with RA three years ago and was started on Plaquenil. Dr. had me discontinue in May this year. I have no real pain, just very stiff after getting out of bed in the morning or up out of a chair. I use a walker all the time for balance and support. It's uncomfortable, but I take short walks for exercise. I am 85 and also have PN.

lon1934 08-18-2019 05:21 PM

Quote:

Originally Posted by caroline2 (Post 1144005)
I have 2 friends just dx'd in the last year or so, and my neighbor is now trying to manage RA without the drugs...she took some of them for about a year and she's trying to recover from all the side effects.

The other friend is combining both but would LOVE to not take the drugs. Her doc is now testing for Lyme and maybe it's not RA.

I deal with body wide OA for all my life since 18 and I'll be 77....hip replacement in 2010, left me with a big mess of complications. grrrrrr

I just found this group and lots of good information here....thanks

I took Plaquenil for almost two years and my Rheumatologist had me discontinue this past May. I take no other drugs for my RA.


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