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.