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living with ra, without medication
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raanna posted:
Hi - my name is Ann and I was diagnosed with RA 12 months ago. My rheumatologist was ready to start me on Enbrel right away. I have procrastinated starting any medication because I am scared and I feel that there must be a way to treat this disease naturally. Does anyone have any advice on living with rheumatoid arthritis without medication? If biologics slow or reduce the symptoms to prevent damage, can't you attain the same result naturally? I am very confused and need some advice. Thanks for taking the time to read!
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DIYSTER responded:
I only wish it were possible and it was for a lack of my trying different things. There doesn't seem to be anything that tells your immune system to stop acting stupid and stop attacking your own body. The only thing I have heard from women is that their symptoms tend to subside when they get pregnant. OK, that's no longer an option for me but I thought I'd mention it. Besides the pain and joint deformation, auto-immune diseases can attack your internal organs (for example, you can end up with auto-immune hepatitis), wreak havoc on your digestive system, mess with your skin, eyes - and so on. Left unchecked you face a pretty bleak outcome. FYI I was diagnosed 6 months ago and have been taking Humira (along with Prednisone which I am now tapering and Evoxac for the Sjogrens Syndrome which is common with RA). I haven't had any side effects from the Humira and my last few sets of labs came back good. I do have a lot of joint damage though since it took forever to get a proper DX on me. I encourage you to do some research and consider the biologic. Feel free to email me directly if you want to discuss further at kleekaimama@yahoo.com. Meanwhile, I wish you good luck in your therapies.
 
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WIPitGood13 responded:
Hi Ann, I agree with DIYSTER, I have been reading all about RA ever since I was diagnosed 4 years ago, and I have actually heard of people not wanting to do any medicines, but you can not get away from the joint damage. The RA will continue to attack the joints, sometimes not all of them, sometimes it picks and chooses, but the ones it chooses will continue to deteriorate. All the information I have read from the get go said to get treatment as soon as possible to stop the necrosis going on at the joint level. Pain is another entire issue, as the biologics are not really to treat pain, but to hold back the body from attacking it's own joints. I have started acupuncture for pain control, just recently, and it seems that the Orencia and the acupuncture just might be the right mix for me ( i am also tapering off Prednisone, and I can't wait to be done with it) Also, I am working on changing my diet, and have read two books from Dr. D'Adamo, who wrote "Eat Right 4 Your Type' and "The Genotype Diet" ... of which I am using the second to choose what I eat each day. This change in "diet" has changed my life, and I would encourange anyone with an auto-immune disorder to at the very least read the book. I have recommended this book to many poeple who have no diseases or pain to deal with, but have issues with fatigue and energy ... which we all know is a signature symptom of RA. I have had a hard time with fatigue, and this new diet has helped me immensely. Good luck to you Ann, and I would highly suggest you consider a biologic to control the joint damage caused by your RA. I wish you well, and read a lot before you decide, and whatever you decide, it's nice to read your thread, take care and God Bless you. WIP
 
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Fighting4qualityoflife responded:
I was diagnosed with AS over a year and a half ago (appears I have had it for the last 10-15 years) they started me on humira and it did help some after being on it for around six months... I tried natural things before medication and continued after medication and I finally found something that has really helped me in the last few weeks... I have been unable to sustain working out for the last five years and have gotten really out of shape (every day activities wiped me out and left me unable to do anything else) and now after the nutazon have been able to do work out again the last three weeks. I have more energy, more clarity, my well being has improved, it has helped my pain as well. I noticed a difference after being on it a few days and have been improving from there. I still have good and not so good days. The pain is still there but it is helping me get a overall handle on the symptoms so that I can start living again. I feel worlds better then I did and am hopeful that it will continue to improve. The website for the supplement is www.nutrazon.com/Adina. If you have any questions you are more than welcome to email me and I would be more than happy to answer any questions. My personal email is martialartsdiva@yahoo.com. I have tried A LOT of other things as well and if you are looking into things would be more than happy to share what I experienced with some of the different things out there. I hope this helps you and do feel free to talk to me, I am here to help in anyway I can. D
 
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LUCKYRA13 responded:
MY SISTER STOPPED USING MEDS AND IS USING NATURAL ALTERNATIVES. SHE WAS DIAGNOSED WITH LUPIS. SHE USES SOME NATURAL SUPPLEMENTS THAT I ALSO USE . I HAVE RA FOR 10 YRS AND FOUND THE SUPPLEMENTS VERY HELPFUL. ONE MAIN ONE IS ISOTONIX OPC 3. YOU CAN REACH HER AT YAD613@AOL.COM. YOU CAN REACH ME AT XYG44@AOL.COM. THEY WORK GREAT, SINCE TAKING IT I HAVE HAD ONE COLD IN THE PAST 3YRS. I ALSO USE METHOTREX. BUT LOW DOSAGE WITH MY SUPPLEMENTS. GOOD LUCK
 
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bdazey responded:
Hi Ann. My name is Barbara and I have had RA for over 10 years now. I work in the medical field and I am a Registered Medical Assistant. I am currently taking Humira. I took Enbrel for over 5 years with no problems. Yes there are natural products out there that can help with the pain and inflammation of RA but none have been shown to slow or stop the joint damage that occurs with RA. Some of the products you will hear of are glucosamine, chondroitin, SAE among others. Remember most of these have not been tested and are not regulated by the FDA. Look to see if double blind studies have been done on the product you are considering and how many people it was tested on. Most can't stand up to the tough regulations that the FDA puts on medicines for our safety. Your doctor knows about the natural products out there so talk to them. You might be able to take a natural product in conjunction with what you doctor is recommending. Enbrel is a very safe drug. Your doctor will monitor you with blood tests that can pick up any problems that might develope so that you can treat them before a real problem occurs. Remember that there are no natural products out there right now that can slow or stop joint damage. This is why the American College of Rheumatologists recently began recommending using a biologic drug at the beginning of a patients treatment. You should feel confident that your doctor is up to date on the lastest recommended treatment. Early treatment is so important in stopping the joint damage from occuring. I hope you will follow your doctors recommendations. Remember that you are in control of your treatment and the choice is always yours. You can start or stop treatment at any point that you choose to do so. So learn all you can about RA. Some websites to help you are the Arthritis Foundation at arthritis.org or the American college or Rheumatologists has a good website. Or you can find information at the websites of major medical centers like mayoclinic.org. Of course webmd is a very good site too. If you have an questions or want to talk further, I'd be glad to help in any way that I can. There are lots of things you can do to help you feel better. My email is billdazey@sbcglobal.net. Barbara
 
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sarahketurah responded:
I personally think you can because that's what I'm doing. I'm going to look up the other suggestions that were mentioned.....always always continue to research and find new things. Go broke if you have to in my opinion, your body is worth it! The main things I take are Serracor-NK and Low Dose Naltrexone. You can read my story is you wish on my blog....I do my best but I need to post more often. Here it is: gentlehugscafe.com I hope you tell me your story some day on how you reached remission so I can share it!! you can email me at: sarahketurah@gentlehugscafe.com hugs, Sarah
 
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kathyjod responded:
Hi Ann, My heart aches for you. I too have RA and know the pain and loss it can cause. You will be happy to know that there is hope. My disease began and progressed very quickly, affecting my right wrist. The RA was not diagnosed until I was sent to a specialty hand surgeon, who scheduled me for immediate exploratory surgery. What he found was that my wrist had been totally destroyed by RA, and the only remedy was for him to do a total wrist fusion (basically putting a metal plate between my arm and fingers, to hold everything together). Over the next year I was put on several different medications that didn't help at all. My pain was severe, and brought me to the point where I was almost unable to walk. My SED rate got so high that my insurance company finally agreed to pay for Enbrel (I was also taking Methotrexate at the time). The combination of these 2 drugs was miraculous to me. My pain went from about an 8.5 to about a 2-3 literally overnight! Eventually I began to worry about the poison I was putting into my body. Methotrexate can be very damaging to the liver, and even though the doctors say Enbrel is safe there's no way of knowing....in my opinion it's really too new for them to have long term studies. Like you I started looking for alternatives, and soon after started on a daily regimen of a juice product and high quality pharmeceutical supplements. I stopped taking the Methotrexate but stayed on the Enbrel. After about a month I noticed that I could make a fist with almost no pain at all. At this point I started weening off the Enbrel and eventually stopped it altogether. I've been drug free for about 2 years now....my rheumatologist has proclaimed me to be in remission! I don't know if this will work for you but I know what you're going through and that you're probably willing to try anything. Please, please, please make sure you discuss this with your doctor. I am definitely not authorized to give medical advice. And if you do choose to go a more natural path you should give it a good 2-3 months before making any decisions about whether or not it will help. A sugar and flour free diet, and exercise are also great to incorporate (both things I struggle with maintaining, but good advice....) I have a video on my blog that you might be interested in checking out, you can view it at kathyjodrey.com/rheumatoid-arthritis-disease-what-you-can-learn-from-them/ Please feel free to contact me if you'd like. You can find contact info on my blog, my email is the best way to reach me (just let me know who you are in the subject line - I get tons of emails and want to be sure I open yours) I hope my experience can be helpful to you in some way, and wish you the best of health in the very near future! Kathy J
 
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minnesotacold responded:
I am despritly looking for another route as well. I have been looking into the antibiotic therpys and and seeing proven resalts..?..I am seeing a rhumotologest finally in the morning that is more on the holistic natural side. I feel like every time I inject myself with methotrexate and enbel I am only injecting poison into my system that is going to cause more harm then I am aready facing. It is so scary, frustrating and ......Any input from anyone on research or anything would be so much appriciated. please email me at mkconstancio@gmail.com I believe my children are following in my foot steps and this whole thing is really scary as a person with RA and a mother
 
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minnesotacold responded:
Oprahs web site has alot of information on diet and linked me to several useful sites. also goggling diet for auto immune disease. I am seeing a slight different but time will tell. I do believe it has alot to do with it as well as caffeine and smoking making it worse and possible bringing it on so the Dr told me previously..?..
 
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RAWarrior responded:
Minnesota, I hope you will not give up on medical treatment for RA. The disease does tend to wax and wane for many. And when it is "better," the damage continues. People can get confused about what causes the disease symptoms to improve. It is the natural cycle of RA, not diet: rawarrior.com/2009/06/four-courses-of-rheumatoid-arthritis/ Here is an article about natural medicines for RA that might help you, too. rawarrior.com/2009/11/rheumatoid-arthritis-and-medication-are-natural-medicines-better/ I wish there were a different answer, but fighting RA is the best thing for your children. They will not only see your courage to face the disease, they will probably have you around longer. Kelly rawarrior.com


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