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Hi,

I've been meaning to share this info with you all for quite some time. Here it is.

I've been experimenting with all kinds of things, from UVA1 to psych meds and supplements. I used to own an alternative healthcare practice so I've been at this for quite a while with no success until last year.

My SLE symptoms got really bad in 2007. I was hospitalized in December with a bad rash, and had various other problems, the newest of them being a diagnosis of Bipolar Disorder brought on by SLE. I had read in several studies that Bipolar Depression could be treated with EPA fish oil/Omega 3 fish oil. I started taking 18g of fish oil a day as that was the amount used in the NIH study done here in the U.S.

Unfortunately, it didn't do much for the bipolar. But I got hospitalized with allergic reactions to several meds at the same time, so I had to quit and restart the fish oil several times to rule out the possibility I was reacting to it and not the meds. I was also doing UVA1 at the time, so I did the same: start/stop/do labs, and try to figure out why I was crashing (BP 70/30, HR 125, temp 103 and up). Eventually we figured out it was a couple of meds.

Here's the part you want to know: sprinkled in with all that blood work was C3, C4 and DS-anti-dna tests. Mine have been off the charts in either direction since about 2002 and not measurable for that reason. During all this crazy testing and being sick, they came back into the normal range. The big question was, what made the change possible?

I conferred with several rheums, and all agreed it had to be the fish oil. Every time I discontinued it, the blood work got worse.

Over the last year, I've tried getting off of it several times and retesting. Sure enough, it's the fish oil. In my case, I have to take 18g a day. That's a lot. Luckily, I have an endocrinologist who was involved in a study on cholesterol using the same fish oil for lowering cholesterol about 20 years ago. They were using a minimum of 29g a day, and had to discontinue the study because of bleeding disorders being caused by the large doses necessary to effect cholesterol positively. At this point, I've found very little guidance as to max safe dosages. Please let know if you find anything out.

My aunt was on Cell Cept for a year and got off of it only this past summer. I still wasn't too sure about the fish oil connection so I wasn't too anxious for her to try it. But even though the cell cept cleared up her kidney problems, she was still in a lot of pain and very achy so she obviously needed something. (She's also 88, so that's an added challenge.) With her doctors guidance, we started her on 1g a day and went up to 3g within a couple of weeks. She's been taking 3g a day since. This cleared up her pain. Her blood work was already pretty clean, so that wasn't an issue. She started UVA1 in December of 2008, and that cleared up her fatigue and mental clarity. We keep her at 3g a day because it seems to be a safe dose. My mother also takes 3g and it's had a very positive effect on her, though she only takes it as needed.

Bottom line: Fish oil works for me and my family. It has a positive effect on bio-markers for SLE in our bodies. No guarantees it will with you. The active ingredient seems to be the EPA, so consider that when doing your own research. Contact me if you have any questions.
 

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I'm a 31yr old male with Lupus. I sort of got feed up with my doctor and all the medications, time spent in the hospital. I recently started taking fish oil and flax oil along with some other vitamins. I'm slowly taking myself off those other meds like prednisone and plaquenil. Over the past month, I am starting to feel normal again.
 

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Hi Morpheus,

Just wanted to remind you had some organ involvement going on before, there is a serious risk that it can happen again and with no meds in your system you won't have a buffer zone. Once damage is done it doesn't repair itself, recovery is also very long, slow and painstaking . In a bad flare it is life threatening. Is that something you want to risk? Ultimately it's your call I know but please go into it with eyes wide open ;)

love
Lily
 

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Hi to Morpheus, also...
Just like you, I've become discouraged about all the meds I have been put on in the past two years. I started seeing a chiropractor and began taking supplements in place of some medications. So far, I've been able to lower my Plaquenil dose from 400 to 200mg a day, get rid of any painkillers, and cut my Voltaren dose in half. I'm also starting to feel better overall, and my energy lasts much longer into the day. My goal is to finally take nothing but the maintenance dose of Plaquenil. Good luck to you, also.
 

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florie
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Hi all,
I was on plauenal for a good while. But then my lupus went into remission so i am off the plaq.

I have problems with my lower back,neck and knees. I started to see a chiro and am very satisfied with him. My Tmj is part of the problem too.
Every time i see my rhuemy and sends me for blood work,all comes back negative. I saw him today and he thinks i may have fibromyalgia. So he gave me samples of Lyrica 50mg. I am trying not to put more meds in my body then i have to. I am sensitive to prescription drugs.
I also had an appt with my Chiro who has been putting things back in place that cause me crippling pain. He made ajustments to my neck,lower back and hip. I have been taking natural marine lipid pure salmon oil 1,000 3x's per day.
Super adrenal 220 2x's per day, and Atri-aloe V 1x per day. And for breakfast Whey Protein Isolate. I am feeling so much better. I am feeling more results with the chiro then the Rhuemy. Since i have been taking these supplements everyone has noticed how much better I look. I used to have a gray coloring to my skin, but not any more.
Just my input of precsribed meds verses natural supplements. I have cut down on my other meds.Like my antidepressants,sleep medication and harmone med.
Just my input. Florie

Just my input. florie
 

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Hi all,

Just to say that I take omega 3, 6, 9 with flax seed oil, garlic tablets and multi-vitamin plus my usual medications. Have been taking them for about 2 months now and I have to say things haven't got any worse and seem to be getting better.

Lupo30 x
 

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Hello to Morpheus, I am originally from the Pittsburgh area. I was diagnosed with SLE and Raynauds, 11 years ago. I took Plaquinil for 1 year and gave it up because I thought it was not helping. If I could go back in time, I would have made better choices and gave some of my meds more time and followed my Rheumy's advice more closely. Now I have lost 40% of my lung function to Lupus. I'm not saying supplements are not helpful,but I would consult with your doctor first. Ultimately, it's your call.
 

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florie
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Everybody's systems work differently. What is good for one may not be good for another. I was on plaquenal for a good while. I didn't take myself off the plaquenal , in fact i was scared when my rhuemy took me off. It helped me out alot.

I feel that all the doctor's we see should work together as a team. For it's our body and our life. I don't like taking pain med's only because they don't work for me. I get headaches from them. I am so sensitive to med's cause i have had many bad reactions and was hospitalized. But that's only me and my opinion. If you need to take something and it works than do as the doctor says. But always check with your doctor on med's you want to go off yourself. There is the weaning way and the doctor's approval. Anything i cut down on was discussed with my doctor who put me on it first.
For me the less i can put in my system the better i feel. My Rhuemy has agreed with me on not taking things because of my sensitivity to medications.
And good foods are important too. We are what we eat.(doesn't mean we can't cheat once in a while) :lol:

Always check with your doctor of any changes or additional medications from your other doctors. Thats why they should all work together.

hugs to all, Florie
 
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