20 replies to this topic

[neogenic]

I have a very close friend of mine that has been going through tought times lately with flare-ups, steriod usage, physical exhaustion, etc. and is a single mother. I want to use my supplement knowledge to help her. She's a bit reluctant to take a lot of pills and is in denial somewhat about educating herself as research shows many bad things such as renal failure, etc. long term. Most of the articles I've read basically do supplements to bolster immunity, prevent bone loss (steroids), and decrease inflammation. I got her on a vegetarian diet now and told her to gradually introduce potential allergens in to her diet (one at a time) so as to know if diet may trigger flare-ups. I also got her on a multi and a triple strength fish oil cap (2-3x a day). I know many other supplements, but I want to be sure it is a quality company that she sees a difference with and a combination formula may reduce pill bottle anxiety and increase likelihood of continued use. Any articles, compounds, or specific products would be of great help and I appreciate it. She is a best friend and it's hard to watch someone go through this.

[aikikai]

For Lupus (daily amount, divided through the day);

Calcium (1500-3000 mg) + Magnesium (750 mg)
L-Cysteine, L-methionine + L-lysine (500-1000 mg each)
Essential fatty acids (Omega-3 fish oil, 2000-3000 mg)
N-acetylglucosamine
Zink (60-110 mg)
Vitamin E (400-800 IU)
B50 Complex

+

Multivitamin

[aikikai]

neogenic

Any use of the info above?

[neogenic]

yes, I am going to suggest those things to her. I need to look up more information about the disease, treatment, supplementation, progression, nutrition, etc. for her. She is in denial often and suffers unnecessarily.

[aikikai]

Great. There are a lot more supplements for lupus, but it might be too expensive and "too much pills" for those who don't like supplementation.

[tham]

Green tea :

http://www.nutraingr...green-tea-could

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

[Lazarus Long]

You might also look at advanced clinical trials of new genetic based approaches. This just came over the wires.

Human Genome seeks approval for lupus drug trial
http://news.yahoo.co...umangenome_dc_1

If the U.S. Food and Drug Administration approves Human Genome's proposal for the design of its Phase III clinical trial, the company could begin enrollment by the end of this year.

This is the first time Human Genome Sciences has brought a drug this far along in the development process. The drug, LymphoStat-B, is monoclonal antibody that inhibits the biological activity of a protein that is required for the development of mature plasma B cells.

Here is some info on who is doing the work.
http://www.hgsi.com/products/LSB.html

http://www.clinicalt...how/NCT00071487

http://www.lupus.org....asp?a=217&z=14

[tham]

The Polypodium species, Brazilian common name
samambaia, has immunomodulating properties,
regulates Th1/Th2 cytokine balance, and is likely to
help autoimmune diseases.

http://www.ncbi.nlm....t_uids=10928072

http://www.ncbi.nlm....l=pubmed_docsum

http://www.rain-tree.com/samambia.htm

[Matt]

eat lots of broccoli, cauliflower. cabbage everyday

http://www.webmd.com...le/76/90169.htm

[tham]

The Chinese "Thunder God" vine, Tripterygium wilfordii,
has immunosuppressive properties. It has been used with
some success in lupus, but the therapeutic index is narrow
and toxicity, including blood disorders, nephrotoxicity and
osteoporosis, can occur. In this respect, this herb is not
much safer than immunosuppressive drugs like azathioprine
and sulfasalazine.

It is advisable to consult a Chinese herbalist if you plan to
try this herb.

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....0&dopt=Abstract


It might be better to try polypodium and green tea
above, which have immunomodulating properties and
thus address the problem of an overactive/distorted
immune system more accurately, rather than tripterygium,
which is immunosuppresive, unless the condition is
bad and/or the former two do not help.

Edited by tham, 10 August 2006 - 02:21 PM.

[tham]

Vitamin E looks important as recommended by Akikai above. Also CLA, I3C and pycnogenol.

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum


http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum



Also advisable to supplement with say 0.25 mcg of
vitamin D3 daily as the metabolite, calcitriol (Rocaltriol)
(1,25-OH2D3), as it has immunomodulating properties,
and slows down osteoporosis in SLE patients as well.


http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum


The last study was done on the newer injectable analog,
22-oxa-1 alpha,25(OH)2D3), which is 22-oxacalcitriol
(Maxacalcitol) by Chugai of Japan.

These newer D3 analogs have far reduced hypercalcemic activity.
If you could get the new oral analog, falecalcetriol (Hornel)
by Taisho of Japan, it would be even better, but I don't think
it is available in the USA.

Edited by tham, 10 August 2006 - 04:28 PM.

[scottl]

1. Look into DHEA

2. Young women are classic for lupus and there is a strong mental/emotional component. Have her check out some of the exercises I wrote in this article:

http://www.mindandmu...eID=38&artID=30

2. Re: veggie diet: I really don't want to get into this, but am skeptical that is even a good idea for this person. Regardless she needs at least the RDA of protein which is 0.8 grams protein per kg of her body weight. Odds are since the disease is a strain on her body she probably needs more protein then the average person. If she does not get sufficient protein her body cannot even begin to take care of itself.

[neogenic]

I really, really appreciate this. I am passing all of this along to her. Unfortunately, the reality of life and me being surrounded with people in very poor health is weighing more heavy. If you find more information on Lupus please post it here, I am digging through it and will. spend my vacation next week researching Lupus, Cancer, and Hodgkins for my loved ones (see my other thread too). I am smart, clinically trained, master's level RD with a background in biochem and a fascination with supplementation and people always want me to give them answers or help. Normally, I know or can find out, but this time I really could use a hundred brilliant heads...I love this board. I feel like the student here, more than a teacher...a feeling that I am not insecure about, but I feeling I treasure. I love learning and I love helping people. This time the stakes feel higher for me, with my father-in-law being diagnosed with terminal cancer and my brother-in-law battling hodgkin's. Thanks again. As I said I will be digging through all of this information.

[aikikai]

Try with garlic, raw natural, which can be added to the normal food. And add maybe garlic oil as supplement, but I think raw natural garlic is the best, because you get all the natural compunds.

Garlic is anti-inflammatory and therefore good for Lupus.

[neogenic]

I thought AGE (aged garlic extract) had immune boosting properties, which normally is highly desirable, but wouldn't be strengthening the very system working against her?

[aikikai]

^^
No, why should it? Many natural supplements like E-vitamin boosts the immune system. This doesn't mean it boosts the auto immune disease so it gets worse, it helps normalazing it.

Garlic also protects the enzyme systems in the body.

[tham]

Pentoxifylline (Trental) is a very old methylxanthine
drug typically prescribed for intermittent claudication
and bed sores. It's basically a blood-thinner, and is
related to other xanthine (tea/coffee components)
derivatives such as theophylline, another old-time
drug used in asthma. The xanthines upregulate cyclic
AMP.

Because pentoxifylline has the unique ability to inhibit
TNF-alpha, IL-1b and IL-6, it has been investigated in
many other diseases as well, such as congestive heart
failure, cachexia in cancer, aging, and HIV, osteoporosis,
septicemia, sickle-cell anemia and autoimmune diseases.
I personally think it is an anti-aging drug, largely due to its
inhibition of the above cytokines which rise with aging.

As I speculated, it has benefits in SLE:

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum

http://www.ncbi.nlm....l=pubmed_docsum


I tried giving pentoxifylline to my father to slow down
his dilated cardiomyopathy and congestive heart
failure, as well as the accelerated osteoporosis and
cachexia which comes with this disease, at the same
time hoping to reap its antiaging benefits (cachexia and
osteoporosis of aging, etc), but unfortunately he was
unable to tolerate it.

Note that pentoxifylline at higher doses, like the
other xanthines, can cause cardiac tachycardia
and arrhythmia. Side effects also include gastritis
and nausea.

Typical doses used in intermittent claudication
is 400 mg TID. The 400 mg tab is sustained-release,
as the drug has a very short half-life.

There are newer xanthine derivatives like lisofylline,
bamifylline and doxofylline which I am unfamilar with, so
you may check them out. Doxofylline appears to have
less cardiac effects.

Edited by tham, 19 August 2006 - 04:14 PM.

[neogenic]

I really do want to thank everyone, and my friend Angie does as well. I appreciate all the wealth of information provided and it has offered some new paths to take. I will keep everyone updated.

[Matt]

I wish that my mother would listen to me and eat healthy. She has been diagnosed with lupus for a while now and have had 3 minor heart attacks and is only 45. She lives on tea, chocolate biscuits, bread and cakes. She only has a salad once a week... She takes LOTS of meds... and it's quite obvious that she won't be around for much longer if she doesn't change now. It's good to see that some poeple are looking to find ways to get better through nutrition and/or supplements.

I wish that doctors would talk more to patients about diet and supplements and how important they are too help reduce the severity of disease.

[neogenic]

I will pass that story along too. Thanks for adding a personal story, though I am sorry to hear she is incouragable.