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Thread: Anybody trying to go without any meds?

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    Default Anybody trying to go without any meds?

    Hello all,
    I am newly diagnosed (January) and should post an intro, and will do so soon, but I have a burning question I wanted to ask. I am newly diagnosed with some form of Lupus. My ANA was 1280 and other tests confirmed some sort of auto-immune disorder, but no organ involvement at this point. Seems to affect my connective tissues and leave me very open to infection. I have seen a Rheumatologist twice, and he was nice enough, but did not seem really up on Lupus. He said he could put me on Plaquenil and Prednisone and that was really his only course of action. I do not care to take chemicals this early on as I am only 34 and don't really trust the pharmaceutical industry and the crap they put out as "safe". So I am looking at following a naturopathic course, NOT including those chemicals. I feel that I can possibly get this condition under control in a much more healty chemical free manner. I am at least going to give it a try. Has anyone else out there tried this road? I hear many claim that Plaquenil is really fairly harmless, and then read threads about the horrible stomach problems and such they experience with it. I feel there must be a better way. What do you all think?
    Thanks so much for any input
    Brent

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    Default going without meds

    I would have to say that is a personal choice. I was first diagnosed 4 years ago. I was in denial and didn't take meds. When I had my first flare up I thought I was dying. I then understood the importance of taking the meds. My lupus (SLE) is advancing. I now have some form of kidney involvement and need to see a nephrologist. I hear the natural approach works for some people. It can't hurt to try it.

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    Brent;
    I don't think that you are going to find any treatment method that does not have some form of side-effect. I have even heard people, who are trying completely natural products, talk about side effects. Having said that, each of us manages our lupus in the way that best fits us. However, I would caution you to be very careful about not taking your meds - especially if you are taking meds to surpress your over active immune system, or to control damage to you kidney, lungs or heart. Stopping those meds can cause serious harm.
    Research your medications: what they are for, what they are made of, how they work and what their side-effects are. After doing that, then decide how you choose to manage your Lupus. But, please do not do anything without first educating and informing yourself about your treatments!

    Best of Luck To You
    Saysusie

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    Brent,
    I sense that you are not completely comfortable with your rheumatologist. My first suggestion is that you find another one that you feel is 100% knowledgable on Lupus.

    As far as drugs go...before I was diagnosed I tried a lot of different things to control my symptoms without drugs. I found that the best way to control the symptoms was with my diet. I experimented for years with different diets: Yeast Connection, Macrobiotic, Vegan, South Beach, etc. Right now I am on a lot of meds but I refuse to take Prednisone until I have organ involvement. Steroids are a last resort for me. Once you start on them it's very difficult to go off of them and there are a lot of side effects.

    I am having really good results with Plaquenil with some stomach issues but not enough to keep me from taking it. Also, the following diet seems to be helping: avoid wheat products, only soured dairy products like yogurt, no meat except very little chicken and some fish, a lot of fruits and veggies. I loosely follow a ph diet keep my acidity level down and it has improved a lot of my symptoms. So I choose more alkaline foods when I have a choice and drink mineral water.

    -Kelli

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    Default Thanks for the replies

    You are right keli. I am not 100% comfortable with him. He was nice enough, and seemed intelligent, but he really told me little I had not already found out for myself reading online. And he seemed really surprised that I knew as much as I did. I should give him another chance and have another talk with him, but I may look beyond him soon. National Jewish here in Denver appears to be specializing now in respiratory and auto-immune disorders, so I may look for someone over there that is more familiar with lupus and related disorders. I too agree with keli in that I may consider the plaquenil soon, but prednisone is a definite NO for quite a while. I know some have no choice, but it will take a huge ordeal to bring me to that stage.
    I also see several people saying they aviod wheat. I had read this early on, but have not seen so much about it recently, so was thinking maybe that was not worth it. Is this really thought to be helpful? I am committed to no dairy, and little animal derived proteins, but the wheat is a lot harder, and want to make sure it is worth it.
    Susie, I have never taken any meds for my Lupus, so I am not going off them or not taking them, I have just not started. I only take Coumadin right now for a DVT, and hope to be off that in a month or so. I understand and appreciate your cautionary words, and am doing LOTs of reading and studying, and will definately do what I have to in the long run.

    Well, thanks for the replies and support. I look forward to spending time here and learning more about my disorder and about the experience of all you other "Lupies".
    Brent

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    Default Re: Thanks for the replies

    Quote Originally Posted by ganesha
    I also see several people saying they aviod wheat. I had read this early on, but have not seen so much about it recently, so was thinking maybe that was not worth it. Is this really thought to be helpful? I am committed to no dairy, and little animal derived proteins, but the wheat is a lot harder, and want to make sure it is worth it.
    Brent
    I feel avoiding wheat is worth it. Only because I have experienced the benefits. However, I have a lot of digestive issues so maybe it's more beneficial for me than for somebody without digestive issues. If you are worried about it being difficult and inconvenient...it is. However, I have found that there are a lot of alternatives to wheat that work very well. I use corn or brown rice pasta and I also really like buckwheat pasta (which is not wheat at all). Most wheat is refined and when you eat it your body thinks it's sugar (in my opinion, sugar is one of the worst things for Lupus and all chronic diseases). If you eat wheat just be sure to choose whole grain!

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    Hi Brent,
    I did go the plaquenil/prednisone route--and eventually imuran. Sometimes the problems caused by those drugs are worse than the lupus itself! Last year I met a chemist and when I told him I had Lupus, he said he could "fix me" Turns out he was talking about an alternative therapy using 35% Food Grade Hydrogen Peroxide. It seems that oxygenating your blood can help rid you of some of the toxins that can cause lupus. For the last year, I have been adding 5 drops of this to my morning coffee and my arthritic pain has all but disappeared. In addition, I've been taking MSM and Hyaluronic Acid daily. I suggest that you conslt with a physician who deals with homepathic medicine. There are alternatives that can be helpful! If you are taking the prednisone and plaquenil, you shouldn't just stop as that could trigger a flare. You would need to taper off gradually. Blessings.
    Mariann aka Newdawnday

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    The side effects suck... BUT in six months, my blood work is almost normal again. I don't feel the best a lot of the time... But, it's not so bad that I would rather be dead because I stopped taking my pills. I can't do most homeopathic drugs because of my kidney involvement... Even some of your homeopaths will tell you that...

    I can deal with dizziness and the stuff that comes from the side effects of the meds... At least I'm not full of 85 lbs of water and leaking out of my legs, and walking like the stay puft marshmallow man... Eventually leading to kidney failure because my immune system has decided it wants to be a bully and kick my butt.

    But, that is just my personal preference.
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Ganesha-

    I have been on Plaquenil for about a year and half now. I too was interested in going the natural route..I dont really feel comfortable being on drugs for the rest of my life. The Plaquenil has pretty much destroyed my hair,but other than that I have not had any major side effects..but who knows down the road!

    Anyway I started looking into the whole diet thing...at first i eliminated wheat/gluten from my diet..and i felt great for a while, but then started to feel crappy again. (When i stopped eating wheat I started to eat more protein..) Finally I came across an online book titled "The Lupus Recovery Diet". Basically this book is based on Dr. Joel Furhman's book "Eat to Live" diet. So I went to see Dr F, and have since been following a "whole foods" vegan diet. I still dont eat wheat, and i dont eat any animal products...I eat mostly fruits and veggies...some legumes, nuts and seeds. Manly, an all natural diet..nothing refined or processed! It sounds very extreme, and it is, but when we consider the alternative...

    So far I have felt great...my skin has totally improved, my hair has gotten better, and i just feel much more comfortable. I have reduced my meds from twice a day to once a day...and am about to reduce to once every other day before i go back to see Dr.F again...The goal is to be off the meds completely. Im still in the early stages of doing this diet, but from what i have read it has worked for many people..and so far so good for me. I still see my Rhumatologist in addition to Dr.F...and wouldnt go off my meds completely without consulting her first. I suggest that you find the "Lupus Recocery Diet" online, it has lots of personal stories. And then i suggest buying Dr. F's book as well. He is located in NJ, but available for phone consultation as well. He's not cheap, but so far has been worth the $ for me.

    Sorry for the lengthy response, but i hope this helps!

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    Default

    It's a good idea to experiment with diets to see if making changes helps you feel better.

    As to meds, it is indeed a personal choice. Plaquenil is considered a relatively mild drug and has been given for decades. Steroids present more problems in terms of side effects that can continue after they're no longer taken.

    That said, I agree w/the poster who said you may need to "shop" for another rheum in whom you have more trust. Your ANA 1280, that's fairly high I think. (The mods would know better than I.) SLE and even UCTD are all about management. I know people who repeatedly had life-threatening situations when treated by their former rheums, then they began seeing my rheum (he's one of the top in country) and they've now gone years w/o major problems. It's because he knows the early warning signs of all manner of problems, and knows when and how to treat the seemingly infinite number of medical scenarios that can arise. I'm very skeptical with doctors and demand to know why they tell me to do whatever, but I've come to have so much trust in mine, if he told me to hop in circles on one leg and eat a handful of mud I'd do it.

    Best I can say is, proceed with much caution and thought!
    i love the smell of doughnuts in the morning. it's the smell of... victory!

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