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Old 05-24-2011, 03:46 AM   #1
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Rheumatoid arthritis and low carb

Does anyone have personal experience with RA and low carb? I am close to someone who has very severe RA and I have noticed many people here say that this woe has helped with the chronic pain of arthritis and/or fibromyalga (which she has also been dignosed with). Her orthopedic Dr. has sort of poo-poohed the change in diet and has in fact told her "Don't even try to lose weight. It won't happen on the steroids you are on." She is feeling pretty poorly (i.e. extreme pain and also depression) and I just want to help her out somehow. She knows the benefit of low carb and has in the past lost quite a bit of weight with low carb (before she got sick) but her Dr.s have really downplayed any benefits of low carb or even weight loss of any kind to her telling her that nothing will help and basically it is futile to even try. What kind of life is that? My heart breaks for her!
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Old 05-24-2011, 03:54 AM   #2
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You can't tell her what to do--but I'd NEVER listen to a doctor that obviously doesn't know what he/she is talking about. I started to develop pain in my knee--hereditary--and I took injections as well. After a year and doing some studies, I'll never go back to the injections. I re-started low carb about 3 months ago--have lost close to 25 lbs and there is absolutely NO pain in my knee anymore--I can even sit on them for a while without pain. Everyone is different but my advice to her would be try LC and see how it works. She may indeed have problems losing in the beginning with her medications--but once she sees how she feels--she may gradually be able to totally come off of them. She has a good friend in you too!
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Old 05-24-2011, 04:14 AM   #3
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Miss Rae,

I can only share my personal experiences & what my own doc has said. I was diagnosed with severe, active RA in 1998. 1) 2 things that make gaining weight so easy are the inability to be as active as before & taking prednisone. 2) her doctor is wrong about not being able to lose weight while on steroids. While on daily low doses of prednisone & high doses during frequent flares, I was able to go from 234 lbs. to 169 lbs on WW 123 & then Winning Points. It was slow & I was not able to maintain. 3) Prednisone promotes Insulin Resistance. 4) Lowering carbs deals with Insulin Resistance very effectively. How much they need to be lowered is a very individual thing. IMHO, the best thing is that with control of the Insulin Resistance comes appetite control. 5) My doc has said that in a very small percentage of patients diet can be a factor.

I wish I had known then, what I know now. I would never have gone down the WW road. It is my belief that, for me, that contributed to development of IR & kept me from maintaining.

If your friend doesn't want to do low carb, perhaps you could suggest that she try eating as many grams of protein as carbs at each meal. That might help some with appetite control. That is hard to know with people responding so differently, but studies have repeatedly shown that eating protein with 'starchy' carbs dramatically slows release into the bloodstream. I don't remember where I read that, so can't site the studies. Sorry.

Also, my doc has also told my that the inflammation with RA spills cytokines into the blood with a resulting physiological response of depression. It's like a double whammy. The more severe the flare, the more the pain & the more cytokines, both increasing depression, not to mention the whole grieving thing a person goes through due to all the losses incurred with the disease..

Not every doctor graduated at the top of the class & there are way too many that don't seem to really care about their patients. This doc was very irresponsible in taking away hope for losing weight. If I had a doc like that, I'd find it hard to believe anything he told me.

You are a good friend, & I hope that some of this info will be helpful.

Last edited by happyheart1; 05-24-2011 at 04:21 AM..
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Old 05-24-2011, 04:14 AM   #4
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Thanks Lucky! Oh no, I don't want to tell her what to do, I just want to offer some things she can try and she and I can do this together maybe I can help be a support system instead of a passer by on her journey. He has never told her that low carb is evil or anything, just futile and having lost signifigant weight myself I know that my joints and such are under less stress the more weight I lose. I guess I'm trying to figure out if the low carb lifestyle has added benefits for people with RA or if it is the weight loss alone that is helping with pain. She feels hopeless and in horrific pain every day. And the steroids? Don't even get me started....grrrrrrrrr
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Old 05-24-2011, 04:19 AM   #5
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Wow, thanks so much for sharing Happy Heart! You folks are such a wealth of knowledge, I am so very appreciative. I must say that your weight loss amidst such challenging times is amazing!
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Old 05-24-2011, 04:19 AM   #6
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omg how bizarre!

I only hope the doctor was just trying to keep from making your friend feel too pressured, rather than giving up on her!

Just remember, most doctors get very little training in nutrition, and even less in "alternative" nutrition such as gluten-free or anti-inflammatory diets (both of which I think could help your friend).

Sorry I can't help on the personal front, except to say that several friends and family members with arthritis (not RA) have greatly reduced their pain & stiffness by eliminating gluten and/or dairy and/or sugar.
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Old 05-24-2011, 05:03 AM   #7
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I have RA and I always feel better and lose weight on low carb. Going off gluten has changed my life with my RA. If I slip up and cheat I can tell a difference in my joint pain and inflammation. So LC works for works in that sense too. Staying away from dairy will also help as it's inflammatory also. LC works for many people with autoimmune conditions. Most rheumatologists just want to prescribe medications and have no faith in diets and they are wrong for this. I no longer take any of the RA meds because of eliminating gluten. I was taking prednisone daily along with Lodine (NSAID) and methotrexate and Arava which are high-powered RA meds and was still in a lot of pain and stiffness daily. She should give the diet a try but also she may consider researching the antiinflammatory diet while she is doing this. LC alone may not make her feel better as gluten can be in preservatives and such. I wish her luck!
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Old 05-24-2011, 05:33 AM   #8
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Quote:
Originally Posted by Star73 View Post
I have RA and I always feel better and lose weight on low carb. Going off gluten has changed my life with my RA. If I slip up and cheat I can tell a difference in my joint pain and inflammation. So LC works for works in that sense too. Staying away from dairy will also help as it's inflammatory also. LC works for many people with autoimmune conditions. Most rheumatologists just want to prescribe medications and have no faith in diets and they are wrong for this. I no longer take any of the RA meds because of eliminating gluten. I was taking prednisone daily along with Lodine (NSAID) and methotrexate and Arava which are high-powered RA meds and was still in a lot of pain and stiffness daily. She should give the diet a try but also she may consider researching the antiinflammatory diet while she is doing this. LC alone may not make her feel better as gluten can be in preservatives and such. I wish her luck!
Rob Wolf referenced a study that indicates taking NSAIDs contributes to a leaky gut which in turn causes inflammation. Isn't that a nasty downward spiral?! Treating the symptom with something that causes the disease is classic modern medicine.
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Old 05-24-2011, 06:05 AM   #9
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Rob Wolf referenced a study that indicates taking NSAIDs contributes to a leaky gut which in turn causes inflammation. Isn't that a nasty downward spiral?! Treating the symptom with something that causes the disease is classic modern medicine.
yes! I believe I've had gluten intolerances since I was a teen and the leaky gut situation also. I also have PCOS which is another problem that some believe can be caused from leaky gut. I'm glad you mentioned this. Taking probiotics have also helped me. Cutting out the offending foods has made a tremendous difference in how I feel. I feel better now than ever. Antibiotics also can cause a leaky gut. Prolonged use of steroids is very bad on the gut. It's hard for people to stop taking prednisone cause it helps them function on a day to day basis but if they would just try an elimination diet and see if it helps they may be surprised. It may not work for everyone. RA is very complex. It's the immune system in overdrive. SOMETHING is causing this and it may not be a leaky gut or allergies to foods. It could be a bacterial infection or virus or even undetected Lyme disease (tests aren't very accurate for chronic Lyme) and finding out the cause is what the doctors need to be doing instead of just suppressing the immune system with these toxic medications which have horrible side effects and still make you feel like crud and can hardly function. Classic modern medicine is gonna kill us all
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Old 05-24-2011, 06:18 AM   #10
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"and finding out the cause is what the doctors need to be doing instead of just suppressing the immune system with these toxic medications which have horrible side effects and still make you feel like crud and can hardly function."

This!!!

Thanks again everyone.....Each and every personal story will help us try new things. I have sent her the link to this thread and after work she will check it out. We have a vacation planned together in July and it would be so much more pleasant for her to not feel like death for just 2 days. We'll get there!
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Old 05-24-2011, 06:23 AM   #11
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Originally Posted by Miss Rae View Post
"and finding out the cause is what the doctors need to be doing instead of just suppressing the immune system with these toxic medications which have horrible side effects and still make you feel like crud and can hardly function."

This!!!

Thanks again everyone.....Each and every personal story will help us try new things. I have sent her the link to this thread and after work she will check it out. We have a vacation planned together in July and it would be so much more pleasant for her to not feel like death for just 2 days. We'll get there!
Sounds great! Please suggest to her she go gluten and dairy free and do low carb with just a clean diet of meat and veggies. She can later add in some cheese and see how she feels. It may make a world of difference for her
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Old 05-24-2011, 08:18 AM   #12
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My daughter has JRA.

When first diagnosed, she was put on prednisone while they worked on the correct protocol of other drugs. There is *no* good time for a young woman to be on prednisone, but 9 is the worse. Her appetite went through the roof and she gained quickly.

She is (IMO) predisposed to carb issues, had an Rx working against her. She's now 14 and has recently lost the weight gained during the 6 months after her diagnosis. She lost weight by a *modified for children* low carb. She looks, and feels, good. (She's on other meds for the JRA). We both believe part of the pain reduction is less weight. She also feels better in general eating low carb.

Regardless of the diet poo-poo of the Dr., I'd dump him. Honestly, to tell someone not to lose weight because it won't help their joints is plain old......not smart.
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Old 05-24-2011, 05:25 PM   #13
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Quote:
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My daughter has JRA.

When first diagnosed, she was put on prednisone while they worked on the correct protocol of other drugs. There is *no* good time for a young woman to be on prednisone, but 9 is the worse. Her appetite went through the roof and she gained quickly.

She is (IMO) predisposed to carb issues, had an Rx working against her. She's now 14 and has recently lost the weight gained during the 6 months after her diagnosis. She lost weight by a *modified for children* low carb. She looks, and feels, good. (She's on other meds for the JRA). We both believe part of the pain reduction is less weight. She also feels better in general eating low carb.

Regardless of the diet poo-poo of the Dr., I'd dump him. Honestly, to tell someone not to lose weight because it won't help their joints is plain old......not smart.
I'm so glad she is doing much better! Kids should not have to go through having JRA One of my friends on FB, Jeff Gottfurcht just summited Mt. Everest. He has RA and is the first person EVER to summit it with RA and he has a charity that raises money for kiddos with JRA. It's kinda like the Make A Wish Foundation but for JRA kiddos. A friend of mine has a daughter who has JRA and her doc said they are looking into the Parvo virus causing it in kids. Have you heard of this? She is now off of methotrexate and in remission. Hopefully, she will stay that way. She has had some rough times for sure. Darn RA
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Old 05-25-2011, 04:14 AM   #14
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FYI-Have any of you read the 'Spoon Story"? It was written by a woman who has Lupus & is a great explanation of what anyone with a chronic illness that is painful & limits functioning goes through, be it Lupus, RA, Asthma, Fibro, etc. It's at http://www.butyoudontlooksick.com/ar...e-miserandino/
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Old 05-25-2011, 04:25 AM   #15
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FYI-Have any of you read the 'Spoon Story"? It was written by a woman who has Lupus & is a great explanation of what anyone with a chronic illness that is painful & limits functioning goes through, be it Lupus, RA, Asthma, Fibro, etc. It's at http://www.butyoudontlooksick.com/ar...e-miserandino/
Yes, it's really great when explaining to friends and family how little you can function on a day to day basis living with a chronic illness. There were many days when I ran out of spoons before noon. I'm glad those days are over and I found out that foods were causing my problems. I'm still not 100% and still have to give up spoons on a daily basis but I'm much better Winter is rough though. If I lived in northern US during winter I would probably be in horrible shape. Winters here are bad enough for me Summers are best for me and I'm looking forward to having a few months where I feel my best
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Old 05-25-2011, 04:29 AM   #16
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I just discovered the link I posted doesn't work. The site is butyoudontlooksick.com, or just google 'the spoon story'.
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Old 05-25-2011, 04:53 AM   #17
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Popping back in to say I was just on another site, which I don't think I can mention. There was a long thread discussing Prednisone & weight loss. People with every imaginable chronic inflammatory illness were jumping in. Two things that really struck me were that most experienced "rabid hunger" on the drug & Low Carb seemed to yield the best weight loss overall. One woman said that after trying everything else & on the advise of her doctor she went on a low carb diet & lost 84 lbs. in 11 months. That kind of anecdotal evidence is impressive to me. A couple of folks with GI illnesses reported going gluten &/or lactose free was helpful for them. As always, YMMV, but when ill with RA & Fibro like the original poster's friend, you are willing to try most anything if there's a possibility of even a little relief.
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Old 05-25-2011, 05:04 AM   #18
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Popping back in to say I was just on another site, which I don't think I can mention. There was a long thread discussing Prednisone & weight loss. People with every imaginable chronic inflammatory illness were jumping in. Two things that really struck me were that most experienced "rabid hunger" on the drug & Low Carb seemed to yield the best weight loss overall. One woman said that after trying everything else & on the advise of her doctor she went on a low carb diet & lost 84 lbs. in 11 months. That kind of anecdotal evidence is impressive to me. A couple of folks with GI illnesses reported going gluten &/or lactose free was helpful for them. As always, YMMV, but when ill with RA & Fibro like the original poster's friend, you are willing to try most anything if there's a possibility of even a little relief.
That's very impressive!!! 84 pounds in 11 months awesomeness!!!!! I know when I was on prednisone 10 mg daily for several months straight that I was ravenous. I wish I would have followed a low carb diet during that time, but I didn't. At that time, I didn't know food was causing me problems and I ate everything in sight. I craved carbs more than anything and I ate everything but the kitchen sink I gained 40 pounds in about 6 months. Prednisone is no joke. My hair also thinned and I had the moon face. It was horrible. Do you mind sending the PM to that site?
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