I work in research and am wondering if you have suggestions of SLE research you'd like to see done. One example would be items that you take to relieve symptoms, that aren't widely prescribed by doctors yet (not considered standard of care for SLE yet.) I saw a discussion about Green Tea that was interesting. You guys suffer with this disease everyday and some of you know just as much as your doctor about SLE. I am really interested in your suggestions/opinions.
We do need more research, and I'd love to see research on things like
flax seed and flax seed oil
exercise (swimming, yoga, walking, weights)
in other words - more alternative meds. Ways to reduce inflamation and pain without harming our stomachs or livers. Means to treat ourselves in ways that build our energy and our stamina. Ways to STAY healthier.
And...the relation between tendonitis and lupus. I've seen that we're more likely to have it, and find that true for myself.
Also, look at the questions people ask - we always have questions. We have more questions than answers!
THanks for asking!
Just thought of another one!
diet and lupus. I've switched to vegetarian since being diagnosed, and swear that has helped me. I eat fairly low protein, still eat some fish and shellfish.
is vegetarian better for us?
are there foods we need to avoid? are there foods we should favor?
i have my own ideas, but would love to see some research around the topics.
OK, now the ump-teen people who've VIEWED this post can add THEIR ideas!
Thanks for your reply! I came upon an abstract on PubMed today that I thought you might be interested in. I don't have the full article yet, but the abstract gave some info. You probably already know that fish oil - omega's - n3 fatty acids - decrease inflammation....or the theory says. The abstract says there is a growing number of n-3 fatty acid clinical trials for several diseases. So far, benefits were moderate with RA and arterial hypertension. Clearly NEGATIVE with lupus nephritis and psoriasis and atopic dermatitis. Clearly POSITIVE benefit for people with IGA-nephropathy and kidney transplant.
Tracy: What an interesting career you must have. I don't have lupus, I am a mother of a 13 year old young lady who has only been diagnosed with SLE 3 months ago.
Topics that I would like to see would include the following:
*Is there any coorlation between getting a Rhogam shot at 28 weeks gestation (due to the fact of being Rh-) and her child developing Lupus?
*Is there a relationship between where you live (whether young or old) and lupus-especially if you live near power lines?
*DNA testing to find out before adults become parents if they carry the gene for predisposition of any form of Lupus.
*How about laugh yoga, positve self talk- how it plays a role in remission ?
I know it's a little strange, but as a mom, I just wish I could blame someone or something, even if it's me.
Good luck on your research, and keep us informed.
EVERYTHING GOOD IS POSSIBLE !!! :angel:
I first want to thank you for what you are doing!
Like mommymc and hatlady I would like to see more research on diet and alternative medicine.
I have had some success with a raw vegetable diet but it's very difficult to follow. Even then there are many instances where I'm just not sure what is going to be okay for me to eat and what isn't. I am currently reading a book by Floyd J. Chilton called "Inflammation Nation". I've learned a lot from it (am still reading it) and what he's saying about diet and omega-3's makes sense. I haven't found any way to contact him or to get any statistics on his program.
There is also another book by aq Jill Harrington called the Lupus Recovery Diet. I don't have it yet but this lady claims she handled her lupus with her diet.
The other research I'd like to see is on alternative medicine, particulary Chinese medicine.
There are 2 main issues that I think most will agree on. Not only are lupus patients very interested in a complete handle on the condition but also what will assist the medications we have to take so we don't have to take so much of them.
Anyway, thanks again!
I'd like to see more research on DHEA.
I'd like for someone to look into what are the hormones that we are producing in our bodies that are turning our bodies against us and why?
If you test 400 women with Lupus, what will they have in common, does anyone know?
Lupus is mostly a "woman's disease" can testosterone or any other hormone that is produced by a man be the key?
Women actually produce testosterone too, only in lower values
Originally Posted by mviceroy
UVA-1 light therapy
I have had lupus for 3 years now. Very severe - organ involvement, joints etc. The worst part however is the fatigue. I am trying UVA-1 light therapy as a treatment for lupus fatigue. It is working very well for me - although it is early in my treatment. I would like to see if this treatment can help other manifestations of lupus. DeBartolo and McGrath are the foremost experts in this area in the US currently. Anything else you can find would be helpful.
I guess it is a little vague to just say please find a way to make me better!!!
I know there are loads of genetic trials going on but I was wondering if anyone has looked at the relationship between Lupus and other Auto Immune Diseases. I have Lupus and my sister has Rhuematiod Arthritus. Is it genetic or just coinsidence?
Also some way of prediciting a flare. You know like you can roughly plot when you are going to have your period and then you can work out how you can live your life around it. At the moment they just seem to happen and all of a sudden I end up on oxygen in hospital again. It would make my life so much easier.
What ever you choose I hope it goes really well and you get enough funding to make it really worth while.