Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and muscles... The symptoms that distinguish rheumatoid arthritis from other forms of arthritis are inflammation and soft-tissue swelling of many joints at the same time (polyarthritis). The joints are usually affected initially asymmetrically and then in a symmetrical fashion as the disease progresses. The pain generally improves with use of the affected joints, and there is...

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Dr.Weil

After my Bad experience with my Rheumy, I thought I start looking back at Homeopathic remedies. Dr. Weil has a Antiflammatory Diet on his Website and I started yesterday. I also saw that he recommnded Zyflamend as a substitute for Celebrex. It supposedly has the same effect as that, without the side effects. I' ll go to the health Food Store to get some. I still take the Prednisone 10 mg and for pain I take Tylenol Arthritis. Not sure what to do when a flare comes. I hadn't had one in 9 days.Which scares me a little.. But anyway I thought I'd share the Dr. Weil's Anti inflammatory Food Guide Pyramid with you. www.drweil.com.

Replies

lycesq
lycesq

Bigblue - I would be so leary about non doctor prescribed stuff. I do not thin what he is talking about will help your issues. We have had many posts on alternative treatments and while they are on my wish list, I am enough of a reallist to say I don't think so.

If it works for you, I'm glad but really concerned about your joint damage in the meantime.

Warmest hugs,


Lynne
deleted_user
deleted_user

I am inclined to agree with Lynne. Be very careful about changing medications without your doctor's knowledge. RA is such a weird and complicated condition, with people reacting to things in very different ways, that I would be very concerned about going off the reservation, so to speak. I know many times doctors are indoctrinated in their field, but at the same time, unless they're prescribing something really off the wall, I do believe they are trying medications and treatments that have been tested clinically. Just be careful because you don't want to trigger an unwanted response to your condition. If it gives you relief, that's great, but so many of these alternatives turn out to be just a lot of hogwash. Take care and keep us posted.
deleted_user
deleted_user

I agree with Lynne and Dottie. I've had ra for 16 yrs and have tried many many things, supplements, diets, exercises, juices, etc.

Three things have consistently worked for me, Dr. prescribed medication, pure high potent fish oil and warm water exercise.

Be very careful about not consulting with your Dr. b/f making changes in your treatment. You may go into a flare that takes a very long time to come out of.

I think that we all wish there was a magic bullet out there but believe me if there was we would be shouting it from the rooftops!

Take care and be careful.
deleted_user
deleted_user

Guys,
I don't mean to be annoying, but you do realize that Prednisone CAUSES bone loss, right?

I don't believe doctors know best. I could give you plenty of stories where they didn't know best. It's important to understand HOW a drug works. If you don't know the ins and outs of how the drugs you're taking are working on your body, then I think people are making a mistake.

Joint damage is scary of course and I would never want anyone to have to experience such a thing. I also don't believe that alternative methods are necessarily the best for everyone.

I'm completely confused why non doctor prescribed stuff is scary. We've all taken exercise classes without a doctor's approval as well as taken over the counter medications.

Besides that, Zyflamend was recommended by two people on this site who's doctor recommended it.

Though I doubt Zyflamend could actually substitute Celebrex, because they work in entirely different ways, I do think that alternative options work and if you're dedicated to learning and taking supplements every day, then you can get to a place where you have no swelling whatsoever, which is the cause of joint damage.

These are just my opinions of course!
gentle hugs,
Sarah
www.gentlehugscafe.com
lycesq
lycesq

Sarah - you are not annoying; you just have a different point of view. Yes, I am well aware of possible bone loss and that is why I get regular bone scans - no problems so far. I'm glad that your regime works for you but it may not be the answer for everyone. Frankly, I would trust my rheumatologist over Dr. Weil any day.

Lynne
deleted_user
deleted_user

Bigiblue, all I know is that before I was officially diagnosed, I had pretty much figured out what I had. I had two close friends about 15 and 20 years ago who got RA and did NOT have the DMARDS and biologics we have now. They are a mess.

As far as alternative treatments go, I am not looking to just feel better (which is why my rheumy and I will not use prednisone on a regular basis)---I am looking to stop the disease process, or at least slow it down. I want my overall health to be better. This is a serious, chronic disease that, like it or not, requires aggressive treatment. I research stuff practically daily, and I have a list of treatment options. But I have chosen to go the medical route in a fully proactive way.

And I'll tell you what: The best 'advice' I can give is what I would tell my daughter if SHE had been recently diagnosed: get aggressive treatment from a rheumatologist FIRST. Get the disease process under control FIRST.


I have ALWAYS been anti-pharma. Still am. I KNOW, after working in a psyc hospital, how pharnaceutical companies OWN these diseases. I hate it, it is wrong, and it keeps alternatives that are natural and inexpensive away from the public. BUT...I think if there is a diet that would cure us or was the answer or could do the same job as a prescription, the rheumies would tell us. Heck, the surgeon general would publish it. But the most important thing is to check with your doctor before using some alternative.
And Sarah, the reasons that non-prescribed stuff is scary to me are many, in the case of treating a disease like RA. Like when someone like bigiblue decides to change to these alternatives without doctor input. Also, it is another thing we are putting into the caustic mix that RA has brought, and I'm not a rheumy, so yeah---I want monitoring and feedback on everything.

((hugs))
deleted_user
deleted_user

Tessie,
Honestly, I agree with you 100% in terms of, "get your disease under control first."
Lynne, you have always been terribly sweet and smart and I appreciate that. And I also appreciate that everyone lets me have my point of view, even though I do know it's a strong and passionate one. Thank you all for being so cool. :)

I have to admit, I'm glad I experienced the "normal" drugs first so I could have a comparison.

I also think getting a good Rheumy is essential.

In my opinion if you're doctor is completely close minded about any type of diet, supplement routine to compliment the drugs you take, then personally, I think it's a sign that perhaps you need to switch doctors.

As well, I have had more "bad" doctors than good. The first was when I was a child and I know he shaped my view and disdain for doctors thereafter. (I was 8) So please excuse to a certain point, my adamant behavior for alternative medications....I simply don't "trust" doctors.

Along with those reasons, I have done lots of research, just as many of you have. What concerns me mostly is that the methotrexate, the normal protocol seem to first damage the intestines. They seem to also damage the lungs to a certain degree, depending on dispositions. Intestines in particular make up 75% to 80% of your immune system. It only makes sense to me that with more damage, comes more diseases.
Tnf blockers can cause neurological diseases. The fact that they have rarely, but sometimes cause Multiple Sclerosis and the theory that both RA and MS are similar makes me think that tnf blockers in particular are not something to be messed with. They have not been researched long enough.
Both methotrexate and biologics have been known to cause cancer and they're still researching it. FDA approves drugs on the basis that the "good effects are greater than the risks". So honestly, that's up for people to decide. If you feel that getting cancer is worth the quality of life you'll experience before that happens, then by all means, go for it! I personally felt that the quality of life I experienced after taking alternative methods far outweighed the quality of life experienced on the normal RA drugs. Perhaps I will get joint damage, but since I'm having less swelling than I did when I was on the normal drugs, then my research shows I'll have less joint damage because I made the switch. I could be completely wrong of course. I could end up with cancer and joint damage, but I highly doubt it.

Because I can't guarantee anything, I can't say what's best for any person at all.

I doubt a doctor, no matter who they are could guarantee anything either.

Thanks for listening and being so sweet. Bigblue, I wish you the best!
-gentle hugs,
Sarah
deleted_user
deleted_user

Bigblue. I have zyflamend at home here now. It gave me the WORST heartburn, ever! Hopefully you have a different reaction than I did. I'm always leary of going one extreme or another. I think the diet, along w/traditional medication is a safer method. At the very least I'd make sure your primary doc (if you dont have a Rheumy) knows what you are doing so they can monitor joints, etc. Good luck, Lisa
bigiblue
bigiblue

Wow,thanks for all your input. Let me first tell you that the decision to go strictly alternative is not what I plan to do. I just want to research my options. I think I am in the very early stages of the disease. I know that is the best time to start agressive drugs, but my Liver is already messed up right now, and I don't want to go into Liver failure. My Rheumy is a b..... for not being a little bit more understanding, I felt like all she wants is the almighty dollar. I'll be probably looking for another one. In the mean time I am going to my regular Dr. and see what he recommends to do with my liver problem. I will need to wait to have another Blood test in a month and that is the time that I wan to try the alternative route. If I feel better and have no flares then I feel I am doing something right. I need to know you all all feel on any given day.For instance, I get up in the morning and go about my day. I don't feel stiff, except in my Neck a little. I may have sore shoulder's or upper arm muscle pain like I have been excersing for a long time. My toes sometimes hurt, but not everyday. My hand and finger may hurt,but again not everyday. The right hand is the one I get my flare and then It hurts like H. The last one was 2 weeks ago.
My knees don't hurt. My hips don't hurt. I do have chronic back pain, but that aslo has been good for a great while.
So as you all can see I am not in the stages that you all are in, or at least most of you. I read that alot of you are sick with alot of other things, like alot of nausea, great pain all over you'r bodies etc... I don't know how much each of you weighs, bubt as I have read weight has alot to do with Joint Pain. I am on a mission so to speak to see what I can do for right now, until I have to go on these Drugs.
I am 5'6 and weigh 163#. I want to loose 10-15# and see if that makes a difference. Sorry this was so long.
debRAinOC
debRAinOC

I did a little research on Zyflamend a while ago. It does contain ingredients known to reduce inflammation (such as ginger and tumeric), but the New Chapter site says it's for non-chronic inflammation. From that, I inferred that it's not meant for long-term use, so I decided not to try it at that time. If I change my mind later, I know it's readily available at my local GNC store.
deleted_user
deleted_user

Sarah, I LOVE your passion! haha...wish I felt passionate about my RA treatment. I mostly just feel cautiously optimistic. And maybe optimistic is even too strong a word!

Bigiblue, I doubt I would be as aggressive with my treatment if I had your symptoms. Just sayin'. I would be READY to get aggressive if RA heated up, but I would LOVE to NOT be taking all these drugs. For real!
deleted_user
deleted_user

Does everybody else see an add for www.DrWeil.com appear to the right when they click this post? I so hate internet advertising. Don't give up your email address to an advertisement, because you might get spam slammed.

But, this is about what? Anti-inflammatorie diets? Did you realize that most all the natural substances that are touted as having anti-inflammatory properties must be taken in large quantities or over long periods of time to have any effect? Take turmeric. How many people actually use it? Do you take tablets? I happen to cook with it, mostly because I like the flavor, but I couldn't use enough to get any value, except that I've been using for 13 years (no that's not my liver causing me to turn yellow). Ginger is more potent, but how often to you use it? Well, I probably cook with it 4-5 times a week.

I will check your link, bibiblue, because these things generally can't hurt. I contend that if you believe strongly in something, you should try it (within reason, of course), because the placebo effect may work at the very least. I take a Chinese herbal medicine for colds, and, rationally, I can't buy into, but I believe in it, and I haven't had a cold the entire 3.5 years I've had RA, through prednisone, MTX, sulfasalazine, Remicade, Plaquenil and Rituxan. My immune system must be pretty well dinged, but I've got something going.

There are a lot of good points made in this thread. I strongly support Sarah's alternative approach, and I've been rooting for her to reach the point she's at. It was never a sure thing, but she believed in LDN, and took a wild jump to Neprinol on her own, and has done marvelously.

However, I'm not sure I could do that. I've got a pretty good thing going now, too, and while it's not for everyone, I live in as close to remission as I can imagine for 4 months out of 6. Maybe longer next time.

I may not have done as much research as Sarah, but I've put in my time. I think everyone needs to do that. Spend the time understanding the options, and find what works best for you. Some don't have the same luxuries that others of us have, in terms of RA drug availability or even pain availability. Some people are stuck insituations where their doctors don't believe in pain meds, for example.

But, do the best you can. I love it when I see people post about things they've learned, but don't be shy about asking. My dad always used to say (and he would preface his remarks with "my mother always used to say"), if you don't ask, you may never know.

And good luck to you, Bigi. I thought I had problems with my RD until I went to another for a 2nd opinion, and found out he was a turkey. Do remember that early management of joint inflammation is a good thing, but DMARDs, which slow the progression of rheumatic diseases are pretty useful, too.
deleted_user
deleted_user

Tessie and justapilgrim, I just wanted to say Thank you!! I love you all!

Bigblue, I did want to answer the one question....if it was a question...perhaps we can all answer it.

In the beginning, before any drug therapy, natural therapy etc. I was in incredibly bad shape. I think we would all be fairly happy to be in the shape you are in....not to dismiss it, but it doesn't sound as severe as some of us, as you stated.

I could not handle a blanket on my toes, turning my head, sitting up, walking, etc. I was crippled and could have used a wheel chair but never did. That's when I saw the local clinic (before insurance) and she gave me a three month supply of prednisone. I looked it up, read about all the side effects and said goodbye to my chin. I didn't see my old chin for one year. :)

Methotrexate, prednisone, sulfasalazine, none were all that bad and I dealt with the side effects. But as you know now, I'm happier, and I have more range of motion and less swelling than I experienced on the other drugs.

justapilgrim is right.....from the research I have done in the past, it takes A LOT of tumeric and Ginger to do anything. I met a Russian guy a while back who said he drank Ginger tea (made it from scratch) every day. He did not have any illnesses however.

If you do decide to try the homeopathic route, do make sure someone is monitoring you. And as well, make sure you give it time. Some things take a while and generally you can find the information as to how long and how much is needed. Natural healing can sometimes make you worse before you get better, and there's a science and reasoning behind it. I attribute it to being like construction on a freeway....the traffic gets worse as the roads get fixed, but eventually it does get better.

Whatever you do, I wish you the best of luck and I love looking up new information, so thanks!
warm hugs,
--Sarah
deleted_user
deleted_user

One more thing....about weight.

First, I am 5'5", 140 lbs.

From what I have read:
Weight does contribute to inflammation, pain and damage to the joints, and it does have an overall effect on remission (people who weigh less tend to go into remission more often). But when it comes to tnf blockers (biologics) just as many people go into remission who are overweight as people who are of average weight.
deleted_user
deleted_user

New Posts!

www.gentlehugscafe.com

thanks,
Sarah